Eye Care Community
For those with the bright spot when blinking symptom
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This patient support community is for discussions relating to eye care, cataracts, glaucoma, retinal detachment, eye infections, misaligned eyes, intra-ocular implants, refractive surgery (LASIK and CK), glasses, contact lenses, amblyopia, eye injuries, dry eyes, ocular allergy, eye pain and discomfort, pediatric eye disorders, eyelid and tearduct surgery, poor eyesight, and eye surgery.

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Very interesting and an Aha moment:

I've read that cervical carotid artery dissection is a cause for scotoma. This can happen from head or neck trauma, sports injuries or bad chiro neck manipulation. I was NOT examined for this in ER and I have massive neck pain on that side. For years it is my worst TMJ and worst (I assumed) scalene and sternocleidomastoid pain. That is exact area of the carotid artery.

Have any of you been examined for this?  Do they use Doppler?

I finally got my ERG and mfERG appointments for Halloween and Nov 2. Still waiting on the fancy visual field test.
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CW, what fancy VFT are you referring to? Humphrey 10-2?
Interesting migraine article. I was indeed clenching my jaw while reading it :(

Stargazer, I'm also plagued by temporary spots. I've become pretty good at being able to tell which ones to freak out over, and which ones will vanish within 30 mins or so. Tell me, your scotomas are binocular? (I mean identical in both eyes?) Mine are like Soledad's - I have them in both eyes, but they are monocular. This means the issue must be anterior to the optic chiasm in our case.

There are more than four of us. I'm in contact with three guys - one in Canada, on in the UK, and one in Germany - who have these symptoms too. I've taken a hiatus from traipsing around to doctors. I haven't seen an ophth for more than three years. I know I need to make an appointment soonish, but I'm just so fed up with being dismissed. Meanwhile, like you all, I live in fear of a spot appearing right at my point of focus.

Do any of you notice your spots are worse/more likely to appear with any particular behaviours or external events. I've noticed a loose correlation with changes in barometric pressure.

Very glad this thread is active again, though it does tend to increase my anxiety when I devote a lot of thought to it and think of all the tests and avenues I haven't pursued ...


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Oh one more thing. Do your spots appear on an Amsler grid? Mine do. In fact, I am very aware of them when looking at anything patterned or with contrast.
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CalliopeWoman: I've been examined for dissection on doppler and MRI, apparently they can tell months later if there was one, and it came out all clear. But again, a dissection is a major event, there could be smaller ones such as repeated vasospasm that gradually deprive the retina/optic nerve/brain of nutrients and VF defects develop.

melinda68: Yes, mine are exactly like yours in every way (one eye at the time, or both but not in the same place). But please see my earlier post about unilateral scotomata in brain infarction, even these temporary spots could theoretically be at the brain level. Who knows!

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melinda68: and yes, mine are blind spots proper, bits of the Amsler grid go missing.
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Melinda: Yes, my spots also apear in the Amsler grid.

Stargazer: Very interesting arcticle!!!

Calliope: I'm glad you finally got your apointment for the ERG. Good luck!!!

Hugs to you all.
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My newest, huge spot definitely makes a big blur shadow missing spot on the Amsler grid. The oyher, small ones show up as slightly wavy or broken lines.  Also, this really big one scintillates. Not like my migraine aura, more like shutters opening and closing or a ceiling fan going around. It's hard to explain. If I close my eyes and watch closely, it makes light flashes insude of it like lightening, but not all the time.  Mostly it is just like all the others have been.  I don't know if this one is just SO much bigger that I notice these things. Also, because it is right next to central vision I can notice details in ways I couldn't with other ones because of the sheer size.

I wonder if all this TMJ and neck tension could cause carotid artery injury or insufficiency for lack of a better word which affects that side's optic nerve?  As a health writer I would always find that there were so many varieties of injury/illness--not just the worst-case textbook scenario.  If not dissection maybe some weird compression?  Kinda goes along w Stargazer's inter cranial pressure idea.

I'm so nervous about lumbar punctures since they are so invasive but if my ERG and mfERG come out okay I'll go to the fluorescein angio next and then keep moving on until there are no tests left.

Oh, and Melinda it is that VF test you mentioned that is my other next test.

I was not happy in last 3 years having spots come and go but even tiny permanent ones weren't big enough or closer to freak me out to really get me into this panic. But this one, which started like all the others and behaves the same way, is just too big to be okay with getting any more if I can help it.

What a relief to talk to you guys.



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By closer I meant closer to central vision.
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Oh, I also have gotten these in both eyes. Never in same place in VF and never at same time. My R eye which now has the huge one that started as of tomorrow 4 weeks ago has always gotten the most. But my L eye has a small permanent one in peripheral vision and a temporary one came and went one day about a week into this latest round.

This flaring of spots really goes along w autoimmunity issues but maybe not all autoimmune response is to attack the retinal photoreceptors which is what shows up on the ERGs. Maybe other autoimmune attacks optic nerve?  Isn't optic neuritis impossible to see on OTC and fundus
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I've got to stop replying w my iPhone. The typos are annoying. Sorry!  next time, I'll comment from the computer. :-)
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One more question, do you guys have a lot of floaters? I've got tons, especially in my R eye. I still wonder about vitreous tugging not huge enough to cause PVD but enough to cause scotomas from mini trauma to back of retina. I think I read that micro tears from vitreous tugging don't show up on scans and some people are prone to micro scarring?
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CW, yes I've had tonnes of floaters since I was a kid. I have the results of my 10-2 if you want to compare at some point, but it was done prior to my BIG spot appearing.

I think optic neuritis does show on fundus exam. I was told by my most recent ophth that I am a glaucoma suspect because of large cup-disk ratio. He took way too much glee in pointing this out to me on his fundus photos and I didn't return to him (of course, there IS a documented link between mirgraine with aura and normal-tension glaucoma). This was the first time I'd had this mentioned to me, and haven't sought out a second opinion because, well, I'm over seeing disinterested, patronising doctors. But he did assure me it was unrelated to my spots, which he of course made ZERO EFFORT to explain. UGH. I'm beginning to hate the medical industry in the US. At least in Oz, you don't feel you're being manipulated and lied to. Keep 'em sick and broke!

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Apologies. That last comment was unhelpful. I just have quite a few issues with the way medicine is for-profit in this country and the research focus is likewise skewed.
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Don't get me started, melinda. This experience has shown how ridiculous our system is here. Cigna won't pay for my MRI because sudden partial visual loss/blind spot does not "meet their criteria.". I've had to wait almost a month to get tests that also might not be paid for. I have the "best" PPO HSA coverage, too.

Also, all US studies are funded by drug companies. Researchers can't get funded for anything that doesn't involve a drug. I learned that in all my years writing patient materials. Sometimes I worked on medical studies and did copywriting for study subject literature. It's truly shocking.

That, and JAMA reported last July that America's health care SYSTEM is third leading cause of death here.

So, I feel your pain. I'm with ya.
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CalliopeWoman: I don't have a huge amount of floaters.

So I experimented today with forcing myself not to grind teeth and I did notice far fewer spots. Normally I get three to four temporary ones per hour. This time I only noticed two or three throughout the whole day. Could be a coincidence, though, and I wonder how long it takes the body to readjust.
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I Have a lot of floaters in my left eye and a few in my right eye.

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CW, It's so funny. Whenever I make I'm critical comment about the healthcare industry/lack of universal healthcare here, most people are quick to tell me it's the best system in the world and that people die waiting for treatment everywhere else. This is simply not true.
I've lived in the UK so have experience with the NHS. In Australia, I was scheduled immediately at the Sydney Eye Hospital and on my first visit was given the Humphrey 10-2 in addition to the regular Humphrey VF test, as well as an OCT, based on my description of my symptoms alone (the dilated exam revealed nothing abnormal). Total cost to me: NOTHING. No paperwork to fill out, nothing to file with an insurance company. Likewise with my optic nerve MRI. All it took was a swipe of my Medicare card, which every citizen has. Simple.






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Same here:  DH and I have both fallen ill while traveling in France.  In one case, a doctor from the local medical school drove out, after his regular day, to the B&B we were staying in, examined DH and talked with us for about an hour.  With some embarrassment, he explained that since we were not citizens, he was going to have to charge us $20 (yes, twenty dollars).  He said he understood it would be somewhat more in the U.S.

In the other case, I was in the local ER for about 5 hours with suspected pneumonia.  They gave me emergency treatment,, and after X-rays and blood work, determined I did not need to be admitted, gave me some medications and advice, and out we walked.  The charge?  Nothing.
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Yes, it's incredible. The US spends 17.6% of its GDP on healthcare - despite not having universal coverage - which is about 2.5 times more than other developed OECD countries, including France and the UK. Makes no sense.  
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Hey everyone. I guess it's time to finally add my own story. I've been following this thread for a few years now.  My eye problems started in May 2009. Before this time, I had some floaters but nothing that was of any consequence. I do have a fairly high prescription in my eyes and have had glasses since 9 years old.

I can COMPLETELY relate to the lights everyone describes on here. I also have dysautonomia/ POTS where my autonomic nervous system does not function properly. I haven't heard anyone else say they had that on this thread, so I wanted to throw that out there. I have lots of extra lines and lights in my vision if I'm upright for far too long or if I get overheated. Sometimes though I would wake up with lights, so who knows!...haha

For years, I've just been ignoring the lights. When I originally started to see flashes when I blinked, I had seen 4-5 docs and none of them could agree on what was going on with me. It really ticked me off and honestly them telling me 5 different things made me more anxious about the situation than was warranted. Finally the senior doc said my eyes had some vitreous traction and White without pressure, but other than that, everything else is benign and that I didn't need to be seen unless something significant changed. After that visit, I dropped the whole issue and never went back.

Fast forward 3+ years...Something did finally change.

Last Thursday morning, I woke up with something that was very very different than the normal lights I had been seeing while blinking.This scotoma was there all the time and did not change while blinking nor did it change with the amount of light in the room. This spot was just above my center vision to the left. I figured it would just go away, but it hadn't so after a week I reluctantly saw the doc today. He said I have a white dot on my retina in the exact area with the negative scotoma. He had no idea what to make of it and he sounded like he had never seen anything like it before. He has no explanation, but does no further testing on me. No VFT, no EGR, no angiogram...nothing except the basic slit lamp exam.

Of course I get online after I got home and came to this thread to see all of you have already been talking about white spots on the retinas and MEWDS. This doc must not be familiar with the white dot diseases because he did not even mention this to me at all... He was truly just confused... Makes me think I need some new docs.

I ever figure anything out, I'll update. From what I've read though, I'd bet I have MEWDS. I fit the criteria perfectly! Now I just pray this blind spot goes away and no more show up.  
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Birdlady159, I think you have a cotton-wool spot. There are several deseases that can cause it. Go with another doc and have additional test like oct. I think you will find the solution, that spot in your retina is the clue.

http://www.revophth.com/content/d/wills_resident_case_series/p/22849/c/25556/

http://en.wikipedia.org/wiki/Cotton_wool_spots

Mi problem is more frustrating because there isn't any evidence or abnormality in all the test I have had...

Good luck!!!

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They are the only retina specialists in the area without me having to drive downtown. blah!

I understand your frustration, Soledad! Remember, nothing showed up for more than 3 years! GRR! In those 3 years, I had lights almost on a daily basis. Some days worse than others. Some lights worse than others. I didn't mention it before, but I did have a brain and eye MRI, at least 4-5 exams and nothing of clinical significance ever showed up. They told me everything they have told all of you. It is stress, migraines, tmj. It is this and that...I just stopped looking after that all came back normal. I did not want to waste anymore time or energy on it because the docs were saying it was neurological or psychological. The only difference is that you all had more testing than I have had. I guarantee you my results would have been normal years ago.

This is the reason why I posted on here. After 3 years, they FINALLY did see something.

Perhaps many of us are not quite at a point where something can be detected yet. Maybe with time something will show up that docs can see or perhaps I just have 2 things going on now. I don't really know. I just wanted to let everyone know what happened with me.

I'll keep the cotton wool spots in mind, but after reading about it, it really does not fit me at all. I don't have diabetes or high blood pressure. The other one sounds exactly what I'm getting. I don't know what this really means for me, but time will tell.

Good luck to everyone!! :)
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I keep on thinking my problem is something vascular or something related to TMJ or neck. Yesterday I woke up with an annoying headache, in the left side of the head, like a migraine, but it improved when I opened my mouth or when I placed a hot compress on my neck. I was seeing bright spots all the day ...

On the other hand, I think it could be related to any vascular problem since my family doctor told me last week that it is necessary to have a test with contrast in order to see most of vascular deseases, and I haven't done any test with contrast. Even the MRI was without contrast. I also read somewhere on the internet that there are some rare vascular retinopathies that only can be seen using a fluorescein angiography, and it is probably the only ophtalmologic test I haven't done yet (docs told me that if the other tests didn't show nothing wrong it wasn't necessary to do an angiography, but I want to have one).

Tomorrow I have an appointment with a neurologist recommended by my family doc.

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I have heard countless stories from friends in the UK, Spain, Canada and France that corroborate the fact that our system ***** in the US. Socialized medicine for the most part WORKS. There was a July story in the NY Times about the people in the US happiest w health care are those on Medicare. That's govt run health care, people.

I'm finally getting the ERG at Jules Stein day after tomorrow and mfERG two days after. The Humphrey Field test STILL hasn't been scheduled.

As for eye doctors not knowing about white dot diseases, I encountered this 3 years ago when my opthalmologist had never heard of it and told me to "stay off the Internet." (I'm a journalist. It was easy to google these symptoms and read PubMed.)

I like both my neuro and retina specialist now, but if this is something that could have benefited from early intervention, I'm now on week 5 since the persistent scotoma appeared. I'm taking Valtrex based on that small Azoor study theorizing autoimmune response to chicken pox or HSV1 in case that's what this is but have not had improvement after a week.

I could tell some horror stories about our health care system after watching both my parents die -- one from hypoxia-induced brain damage and one to lung cancer. I had to double check almost EVERY suggestion/prescription from doctors and found so many egregious errors it made me realize that the patient ALWAYS needs to educate himself/herself or have an advocate. There are so many errors, so many doctors who don't know what they are doing, too many specialists who don't check w others about contraindications and so little continuing education. Also, many medical "journals" are written BY drug companies. Google Fosomax and fake journal. Research for drugs is skewed in favor of drugs with patients thrown out of study y results if they have bad reactions to drugs. It is a mess.

I apologize for the ranting but it's personal now.

I think for those of us with permanent scotomas, not just transient spots, there is something being missed. I want to research as much as possible to perhaps help.

I'll keep you posted. Love and peace and health to all.
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Meant to add, also google fake research journals for Vioxx, Celebrex & Bextra. Also, google skewed cancer survival rates based only in early detection.  The early detection makes a cancer patient earlier who still dies at same time as those diagnosed later but early detection makes it appear treatment is working. The book Overdiagnosed goes into this in great detail.

I don't mean to hijack this thread and I apologize but my message is do not let a doctor say these spots are "nothing" or "migraine variant" when they don't bother to do all possible testing or even educate themselves on new possibilities like AZOOR.

I also want that flouroscein angiogram. I want to exhaust all testing. And my neuro who I trust said an MRI w/o contrast would not pick up eye problems in certain areas. So even those of you with clean MRIs aren't in clear w/o one also with contrast.

My spot is so large and disruptive. If It gets bigger or I get another or a large one in the other eye, it will be a dramatic loss of vision.

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Calliope,
Your rant was both warranted and welcome (to my ears, at least). Healthcare in this country is beyond corrupt. It's an insidious, cynical, money-making industry in which care for the individual is relegated to the bottom of the heap, after everyone's taken their cut. Hippocratic oath hahahahhahahaha.

I've read reports where a significant % of oncologists say they would NOT undergo radiation or chemo for cancers of liver, pancreas etc, and would just adopt pain relief measures at home.

Meanwhile, drug companies don't research for cures, just for chronic symptomatic treatments. I despair.

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I imagine doctors today feel the same threat from information dissemination on the internet today as the European clergy did with the advent of the Gutenberg press, when the bible was translated from Latin and distributed to all those pesky plebs.
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Agreed.  Totally.

I had my ERG yesterday. Wow, nobody prepared me for the total blur for 2 hours after OR the "discomfort" when the numbing drops wore off. I'm not a crybaby but that was fairly brutal. Plus, nothing like being tested for something that could make you go blind and what's the first thing you have to do?  Sit in a small room for 30 minutes in TOTAL DARKNESS!!!  Note to Jules Stein Eye Institute: music, please.

I have to get the mfERG tomorrow, because apparently ERG alone can't rule out AZOOR or a few others. It's supposed to last longer. At least now I know what to expect.

My Humphrey whatever visual field test is next Wednesday and I'm getting bloodwork for all kinds of markers of inflammation, lupus, sarcoidosis, TB and syphilis. I had to laugh at the syphilis one, same as when I was tested during pregnancy. Apparently a form of TB can make scotoma so if your docs are patting you on the head saying migraine variant and you haven't had the gold standard latest TB test, ask for it.

That's all I know for now. I'll keep posting. That so many are sent home after slit lamp exams and MRI w/o contrast blows my mind. There are so many possibilities that must be ruled out before the standard "retinal migraine" or "stress" BS non diagnosis.

Hope you are all well.
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Bird lady, I don't know how I missed your earlier posts. Sure sounds like MEWDS or one of the other White Dot Syndromes based on my research. Find a retinal specialist, not an opthalmologist.  And welcome to our spotted little group here. :-). Let us know what you find out.
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Was reading about differences between ERG & mfERG at Webvision Opthalmology teaching sitel. Came across this:


"A limitation of the traditional global or full-field ERG is that the recording is a massed potential from the whole retina. Unless 20% or more of the retina is affected with a diseased state the ERGs are usually normal. In other words a legally blind person with macular degeneration, enlarged blind spot or other small central scotomas will have a normal full-field ERG."

So, those of you who have only had a regular ERG, not a multifocal one, will most certainly have normal results since our blind spots generally do not take up 20% of our visual field. This is just more knowledge to continue looking for answers.  Glad I'm getting multifocal ERG as well tomorrow.

Here's the source:

http://webvision.med.utah.edu/book/electrophysiology/the-electroretinogram-clinical-applications/

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Had my mfERG test today, and results of it & my regular ERG won't be available to my doctor for at least TEN DAYS.  This from 1 of the most prestigious eye institutes in the US. aS of tomorrow, it is 5 weeks since I went to the ER w my huge blind spot.  

I have the Humphrey visual field test next Wednesday.

What's this I hear about the US being so superior to counties w/ socialized medicine because we don't have to wait?  BAH.  Also, Cigna did not pay for MRI and remains to be seen if they will pay for eye tests. Also, only paid $43 to my neurologist for one visit. Total out of pocket we owe so far: $2800.  With no diagnosis yet and looks like another 2 week wait.

I'll keep everyone posted.
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Oops, just got another bill from ER. Add $166 in lab tests not covered by Cigna. (The best PPO offered, with additional HSA.)

Meanwhile, newer blind spots slightly increasing in size. I'm sure stress does NOT help.
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How horrible. Maybe it wasn't an ERG I had, because I certainly don't recall that kind of discomfit, just the usual light sensitivity/blurriness from the dilating drops.
I neglected to mention another thing I've been told by ophthalmologists on several occasions, with varying levels of compassion: you can continue to pursue this, have every cutting-edge test at the best teaching hospitals in the country, but I can tell you that whatever it is, it likely won't be treatable. Best just to learn to live with it, get on with your life, stop obsessing over it.
SIGH.
Hope the next 10 days aren't too trying for you. Waiting is the worst. Let us know.
Mel
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I think I had ERG and mfERG, but I am not sure. I had two different test with the electrodes on the corneas, one looking at a screen with black and white patterns with the light turned off and another one looking into a "globe" with flashes of light symilar to the VF machine. I had made this second test with the lights turned off and then with the light turned on. I also had a VEP, the test was similar to the mfERG but they didn't put the electrodes on my corneas in that case.

I have to read with detail the ***** of the results in order to be sure I have had the two types of ERG and not only the normal ERG.
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hahaha, sorry but I wanted to write "sheet" and I wrote another word by accident (for Spanish speakers the pronounciation is symilar). Sorry!
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This vision loss is too substantial at this point to just not worry about it or accept undertrained ophthalmologists admonishments to "live with it.". There are  causes that CAN be treated if found, including some autoimmune retinopathies that respond to immunosuppressant therapy and others that tespond to prednisone.  A small but significant number with AZOOR have stopped the progression and halted permanent damage with antiviral therapy like I am trying now.

Plus, if this is a strange variant of tuberculosis or lupus or sarcoidosis, I would like to know about it and possibly help others find answers. The ONLY possibility mentioned to me that says little hope for any treatment working is AZOOR, and even there some are helped with Antivirals.

Soledad, it sounds like you had both ERG & mfERG.

If another spot appears as large as the one I have now in my other eye, I might not pass a driving test. Just learning to live with it isn't an option until I've exhausted all possible testing.  And some of that testing might require my own research to know what else to look for. I am certainly not willing to abandon hope at this point. Every morning I wake up afraid to open my eyes wondering if a new spot will have appeared in my central vision.

I'll report anything else I find out.

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Another scary possibility is cancer induced autoimmune retinopathy from an undiagnosed cancer somewhere in the body, or related to melanoma which is usually found before eye symptoms ovcur but not always. I don't believe this rare possibility is metastatic but rather an autoimmune response to the cancer elsewhere.  I have only read two studies related to it.

I also believe this RARE retinopathy manifests similarly to AZOOR, AIBSE with clear exams and funduscopy but irregular mfERG. It is rare but possible. Some cases of this heralded slow growing cancers long before they would have become symptomatic-- even years before. Knowing this makes me even more determined to exhaust all testing and get some sort of proper diagnosis, even if it's just to say "we've ruled ALL of these other things out and don't know."

I guess I'm particularly worried because I have a 7 yr old and really want to see her grow up.

I only add this info for those who also want possibilities to research themselves. They are all easily found online and several retinal textbooks can be read in entirety on Google Books.  

All of these possibilities relate to the scotomas that persist/are permanent. But since I started 3 years ago w ones that went away, I wonder if this family of retinal problems doesn't begin with transient ones before gprogressing to permanent damage.

Best to all.
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CalliopeWoman,
I was supposed to see my doc (who is a retina specialist) this Thursday, but I no longer have insurance. I'm not sure what to do about it. My blind spot is still there and another smaller one has formed just to the right of the original. Interestingly enough, 2 days ago, I had a very very bright pinpoint light in my eye just like the other blinking lights I get and I think it turned into this new spot. It's not very big, but today I have been noticing the spot more and I think that may be why.

I was hoping this would start to go away by now. I am going on 3 weeks now.

I was reading through your history and it is shocking to me. All of this started 3 years ago for both of us and only now we are both experiencing permanent scotomas. That's pretty wild...As you said, my brain is trying to fill in the spot, but it doesn't always do a good job at it and it gets the colors wrong. Sometimes if I look at a blue background, it will instead be orange or a slightly blueish gray color in the blind spot area. Do you have that as well?

I am thankful they found SOMETHING on my retina, but I'm not sure how confident I am in this doc.

The MRI I had a few years ago was with/without contrast. All was normal.
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Birdlady159: I remember that there was a person with our symptoms on another forum, who also had POTS. She mentioned that, while on beta blockers, her temporary spots reduced in intensity and frequency, to the point where they stopped occurring completely, but when she stopped taking the beta blockers, the spots returned. I am wondering if any of you have had experience with beta blockers? If they do help, this might point to the stress/vascular/migraine line of diagnosis.
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Another question, have any of you been exposed to pesticides (e.g. permethrin cream against ticks / pyrethroid spray against domestic insect pests) before the onset of symptoms?
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Sorry, Stargazer, none of the above apply to me. I have low-normal blood pressure and no chemical exposure I'm aware of.
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Last week I saw a neurologist recommended by my family doc. When I described him my symptoms he was disconcerted. At first he said it may be a retinal migraine, he also said that retinal migraines are very unusual and rare, but it is the only thing that could have symilar symptons. He said he would study my case with detaill, he had to revise all the literature and then he would call me. At least there is a doctor who seems to be interested and has the curiosity to find the cause of my problem. I received a call from him yesterday and I had an appointment this morning. He told he had revised the literature and I think he also talked about my case with some mates in the hospital. He want me to have a fluorescein angiography in order to test the vasculature of the retinas. He also said that these symptoms don't fulfill with the requirements to be categorized in any known disease, even retinal migraines. He said I should stop taking contraceptive pills for a time and he will probably decide to make the prescription of some vasodilators, because he think it may be something vascular, but I have to wait for the angiography and then he will decide about it. He is sure it is a problem in the retinas and not in the brain. But who knows... next monday I am going to have an appointment with another ophtalmologist and I will show him the medical report made by the neuro and I will ask him to have the angiography.

Sorry for the very bad English.

Good luck and best thoughts.
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Soledad, very interested to hear what your neuro says. Did he mention persistent retinal migraine without infarction?  That's a controversial term that I've seen come up in the lit is mfERGs are normal.

I had my Humphrey Visual Field test yesterday. Immediately got results "within normal limits."  I wasn't expecting to fail that because my scotomas are paracentral, not peripheral. Still waiting for erg & mferg results.

I keep having small flashers appear, then disappear w/in minutes. And no, I am not just looking at bright lights and getting confused. Something bizarre is going on more than usual.

I'm on day 18 of high dose of Valtrex. I read that chronic Epstein Barr can be implicated As possible AZOOR precursor in addition to the other herpes viruses. I have not had another permanent spot form since taking it but there has been no improvement in the ones that formed prompting me to go to the ER almost 6 wks ago.

I am anxious to see results of my erg & mferg. If those are abnormal, fairly certain Ill get AZOOR diagnosis. But I still want my eye vasculature checked because so much diagnosis seems utterly subjective, and AZOOR is a diagnosis of exclusion rather than a definitive yes/no. The retinal photoreceptor function seems to be the hallmark.

Interesting about beta blockers. I have very irregular blood pressure varying from low normal to 220/120 when panicking. Makes treatment almost impossible since I pass out on BP meds and still shoot high when anxious. Wonder about damage to vessels during high episodes though.

I also read about retinal traction prior to post vitreous detachment causing micro holes in macula or the epithelial membrane often NOT seen by imaging. The symptoms also sound like ours.

Thinking of you all.

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Incidentally, I'm going back on Lutein/Xeazanthin. Figure it can't hurt, and supports macular/retinal function. Also, gonna start bilberry since it specifically improves micro circulation in eyes.

Also making appt w my naturopath as soon as I know mferg results.  May be something natural to encourage neural health or help offset effects of autoimmune issues. Western docs know nothing about this.
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Curious thought: any of you know your blood clotting factor from recent bloodwork?  I've always had very thin blood and wonder about micro hemhorrages in tiny eye vessels. I also bruise easily.

I'm also surprised nobody but me seems to be getting tested for TB or sarcoidosis or Lupus markers. All have eye symptoms.  And am I only one who has had cancer induced retinopathy suggested?  It's rare but a possibility that truly scares the crap out of me. I wish all these specialists would get together once in a while to compare notes.
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This sounds like something I probably wrote on another forum. Let me know where you found it and I'll confirm. hahah Yes I took a very low dose of beta blockers for 3-4 months in early 2010 and I stopped noticing them. Over time (a year or so) the lights gradually came back and I'm not sure when I started noticing them again..While on the beta blockers my HR wasn't hitting so high every time I stood up, so perhaps there is a vascular/blood vessel component to this.

At the present time though, the lights I had back then I still have now, but this blind spot is something much much different. It is always there and not dependent upon blinking or the lighting in the room. :(

I do have traction on my vitreous. That was confirmed a few years ago and since I'm young, the docs thought it was a bit peculiar. I'm 28 now, but this all started when I was 25. I've had POTS since 16, so I dunno why if it was related to all of that, I didn't have it sooner.

December of last year I had strep which turned into erythema nodosum (ouch), so I had sarcoidosis and Lupus ruled out at that time. My retina "specialist" didn't even know  what would cause a "spot of hypopigmentation" on my retina, so I don't expect him to really throw out any other ideas at this time. I cancelled my appt today and made one for Dec. If the spot is still around I'll go back....I wish they would have taken me more seriously when I DID have insurance.

Take care everyone! <3
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Thank you for your answer, Birdlady, the post I was referring to is here:
http://is.gd/gh9427

Your experience with beta blockers is very interesting, for two reasons.

Firstly, beta blockers are used to prevent migraines, and their mechanism of action for this purpose is not fully understood. My very limited understanding of one hypothesis is that a malfunctioning autonomic nervous system releases stress hormones, creating conditions for vasospasm. Beta blockers prevent the vasculature from responding to the stress hormones (whether the latter are heightened due to dysautonomia or e.g. increased anxiety), thus blocking the vasospasm. So, even though some of us (myself included) have normal blood pressure, beta blockers might still help, if the retinal migraine hypothesis holds up.

Secondly, as far as I know, cotton wool spots are the debri on the retina resulting from the ischemic interruption of metabolism in the nerve fibre layer. Articles online generally cite diabetes and hypertension as the primary causes of this, but a retinal migraine is also ischemic by nature. It could just be that the debri around our permanent blind spots get cleared away quickly, leaving nothing for opthalmologists to see, yet the nerve fibres themselves are permanently damaged. Or it could be that the ischemia occurs somewhere along the optic nerve *behind* the eyes, thus the actual debri are never seen.

Also, it appears that migraineurs have a much higher incidence of visual field defects compared to the normal population -- http://is.gd/E4ALcC -- so it's not unthinkable that some kind of permanent damage can be done to the retina and/or the optic nerve by this condition.

Retinal migraines are not always associated with headaches, but I have read that migraine variants have been associated with dysautonomia.

In any case, at least you have found medication that helps!
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Fascinating, Stargazer. I am glad we are all putting our heads together.

I thought I would post the blood tests my retina specialist is calling for regarding possible autoimmune and other causes for these spots. Soledad's neuro had never heard of disease star causing these spots, yet other specialists point to host of possibilities. Maybe we could all mention all of our findings to all of our doctors. Here are my required tests:

CBC
CMP
ESR
CRP
Hsv1 titers
C3, c4, ch50
ACE
VDRL
Quantiferon Gold TB test
Lysozyme

All of these look for inflammation due to autoimmune issues, neoplastic issues, Lupus, Sarcoidosis and others that affect eyes and optic nerves and can be in body for YEARS before diagnosis.

I wish I could add Epstein Barr titer levels after now reading that blind spots present in many with chronic fatigue/fibromyalgia. I've had many of those symptoms for years.

Let's keep sharing info, gang.

Anyone know if there is an eye angiogram that doesn't use flouroscein?  I am very concerned about safety issues there after reading up on it.

Best to all.
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Also, Soledad, if you are regular migraineur, tell your neuro. Vasodilaters are worst for those of us with classic and silent migraines. I found that out when I was being treated for my blood pressure issues. One migraine after another.
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Yes that is me and I linked to this thread.! ;) haha! Unfortunately I could not stay on the beta blockers. I haven't been on them since May 2010. I will take one if my HR is 180 while standing, but other than occasional use, if I take them every day my blood circulation gets very poor in my legs and feet. :(

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Wow. I feel like I've barely begun to explore all these possibilities. When I developed my first spot I had many tests, then gradually over the years, I grew tired of being dismissed and more or less gave up any hope of finding an answer. I'll be following this thread with interest. Who knows, I may even get up the nerve to see a neuro-ophth in San Francisco. I'm very interested in a possible autoimmune connection, and also the possibility of a vascular problem, which would tie in with our migraines. It MUST have something to do with migraines.
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Yes, my neuro know about my classic migraines with aura. He talked about prescribing me some calcium anthagonists, but first he want to see the angiography results to be sure about what he have to prescribe. I didn't know that some of you had had vasodilators and your migraines got worse. I will inform my neuro. Thank you!





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Very interesting about your doctor mentioning calcium channel blockers (am I right that this is what he is talking about?). I think they are prescribed in similar situations to beta blockers, and produce broadly similar effects, although, from what I've read, they work in a different way to BBs: http://is.gd/jKHXzc

I did a quick search and found one report of CCBs being used to treat symptoms that are quite similar to ours (monocular blind spots), although they also coincided with headaches in this case: http://is.gd/LP41XB

CalliopeWoman: thank you!
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I read the abstract about transient monocular spots and verapamil. Soledad, does your neuro realize you have permanent spots or is he assuming they are coming and going?  It has been frustrating to keep explaining to docs that no, my permanent scotomas never fade or change but I have other flashy spots that do come and go. From what I understand about retinal migraine -- which really, in my opinion, should be called retinal vasospasm -- they are always quick & transient. Neuros always look for the retinal migraine varient explanation but I've found nothing in literature to show that CCBs or Beta blockers helps permanent scotomas.  Stargazer, have you?
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Well, here's the thing, I get both transient and permanent ones. The initial course of both is almost the same, just some resolve (over the course of a few minutes to about half an hour), and those that do not resolve for longer tend to leave permanent scotomas. Which suggests to me that the permanent ones are basically scars left by strong episodes of what is otherwise a transient disorder. So, if my hypothesis is right, BBs/CCBs cannot undo the damage that is already done, that is fix the permanent scotomas. However, they might prevent future episodes.
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And by transient disorder I mean a disorder with transient symptoms, clearly not a disorder that goes away!
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Gotcha. I do wonder if whether vascular or autoimmune sometimes whatever the cause the effect is photoreceptor death which accounts for the permanent ones.

Here's an article to show to ANY doctor who passes this off as "retinal migraine."

http://www.sibelium.com.cn/sibelium/wx/fulltext_wx_3/11.pdf

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Yes, you are right. I said Calcium antagonists but I mean calcium channel blockers. I read somewhere they are the same.
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I think this neuro was the only doc who perfectly understood my symptoms. He wrote my medical report and in the section of symptoms he wrote correctly what I have. It is true that it is very difficult and frustrating to try to explain our symptoms to docs. I am tired of doing it again and again, but in this case he understood it very well. He know I have two permanent spots which apeared like the others but they became persistent and turned from bright to grey.

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Amazing to have a dic willing to do research for a patient outside is specialty field. I'm reall interested in what he finds for you. Also, regardless of my erg and mferg results (still pending!) I want an angiogram.

Hugs to you all.
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Re the Humphrey field test, that's why they gave me the 10-2 in addition to the regular perimetry test, which is useful for conditions affecting the periperhal vision like glaucoma. The 10-2 measures the 10 degrees around the fovea, so is more useful at detecting paracentral defects.
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I had the Central 30-2 field test. now I need to find ouT how that differs.
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Okay. From the Journal of Opthalmolologic Technology:

"Since the macula accounts for the central vision, we would order a HVF 10-2. This test only examines the central 10 degrees, hence the name. We could have ordered a HVF 24-2 or 30-2, since these also test the central 10 degrees. However, the 10-2 is a better choice since it tests more places inside the central 10 degrees than the other two tests. It can be thought of as showing a "magnified view" of the central retina.'

So, I had my central retina tested just not as closely as the 10-2 and this ruled out enlarged blind spot but managed to miss my paracentral spots.

I am going to have a degree in Opthalmology before all this is over.
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Hehe. Your medical writing/editing/research skills are certainly as asset.
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As I wait for my ERG & mfERG results, I came across another interesting article referring to the limitations of these tests. On another message board, someone w small but distinct scotomas like ours passed both ERG & mfERG tests, seemingly ruling out AZOOR until years later loss was great enough to be recorded & then diagnosed. I wondered why the mfERG didn't pick it up before and read that unless scotoma covers a certain percentage of a test hexagram, it will read as normal function. Here's an explanation:

http://www.ncbi.nlm.nih.gov/m/pubmed/12076016/

I wonder how many people MIGHT benefit from antiviral therapy even if mfERG comes back normal in early stages of AZOOR when it has seemingly been ruled out. As it stands, that treatment seems to offer only hope for no more permanent damage, and that disease is only one that has NO other signs on tests other than abnormal mfERG & sometimes ERG, but even then not always in early stages.

Food for thought.

Btw, Clive Owen was in a PBS show called Second Sight about detective who loses sight to Azoor. They seem to have gotten symptoms all wrong, though.

Hope you are all well.
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CalliopeWoman: I am by no means an expert, but from the many articles I read on AZOOR when I was researching this condition myself, it appears that it is indeed possible to see photoreceptor abnormalities on OCT, particularly if the scotomas are of significant size:

http://www.ncbi.nlm.nih.gov/pubmed/17846358
http://www.ncbi.nlm.nih.gov/pubmed/21825201
http://www.sciencedirect.com/science/article/pii/S0002939408001633
http://www.dovepress.com/case-of-acute-zonal-occult-outer-retinopathy-with-abnormal-pattern-vis-peer-reviewed-article-OPTH-recommendation1

I think you are right that an occult condition cannot be completely ruled out (especially given how few documented cases there have been), but, given how many of us have had these symptoms (some over many years like Melinda) and have also had high-resolution (spectral-domain) OCT, if this is AZOOR, I think the tomography test would have picked something out like in the publications above, for at least one of us. To me, the symptoms intuitively seem to be vascular. For example, I can exacerbate the transient symptoms by pressing on the eyeball with my fingers (e.g., rubbing my eyes after the shower, although I would not recommend it, as in my case, any of those transient ones might become a permanent one).
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Gass, the man who named AZOOR, in long term follow up studies wrote that OTC did not always show signs, enen late in disease. In fact, if Blind spot was not enlarged, scotoma only AZOOR often only showed w ERG, mfERG. My doc, mentored by Gass who worked on one study, said it can present in so many ways, thats why he immediately put me on antivirals why we try to figure it out.  I asked him if the OTC would see it and he said, "not always."

Also, many AZOOR patients once had MEWDs which DOES show on OTC.  Not all MEWDS progresses to AZOOR, but there seems to be a correlation.

My point was that if Antivirals can stop progression of AZOOR-- so musunderstood --many w undiagnosed spots might try it. Valtrex is well tolerated and if it worked, it would save vision. Especially if it's a new sufferer.  I would have totally asked for it 3 years ago when my first spots started. Just to see if it worked.

I also found an interesting article about chronic occult sinusitis causing scotoma. I haven't seen many on any message boards about this phenomena writing about going to ENTs. It's another route to investigate:

http://www.rhinologyjournal.com/Rhinology_issues/86_89_Rodel.pdf

here's to everyone's health. Obviously, we don't all have AZOOR or MEWDs or a brain tumor or any possibility. But anyone visiting here w questions might be better armed on how to proceed. That's my hope from sharing our research and ideas. I'm thinking of starting a blog w links to all of this stuff.

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Sorry, iPhone really wants OCT to be OTC. My apologies for typos and autocorrect.

Oh, and stargazer, I make mine worse rubbing eyes too. I really want that angiography.

Blessings to all.
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BTW, awesome that you posted all those links. I have a list on my computer I need to add here including a few interesting articles about hypertension-based vascular problems not readily seen on scans. As someone who shoots high w BP, I wonder about this possibility.

I also wonder if my OCT was the newest spectral one. Pretty sure that's what my retina specialist said it was, and mine was normal when this latest round started.

I'm so fortunate to have you guys to talk with. This is so scary and frustrating.
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Fluorescein angiography finally done, nothing bad, all seems to be normal...

Anyway I continue thinking it's something vascular. I think about minimal vasospasms int he retina causing all the transient bright spots, and in some case this can left some permanent lesions (the permanent dark spots). I also think this (the vasospams causing the bright spots) can't be seen by using angiography, OCT, etc unless we had the test in the exact moment the vasoconstriction is happening. But it have to be any way of seeing the permanent damages... I am confused. Next week I will show the angio results to my neuro, I hope he has any idea...

A big huge to you all.
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Soledad, sending hug back. I'm amazed at how fast you are getting these tests and results. I am still waiting for my ERG, mfERG & blood test results going on 2 weeks for eye tests and a week for blood labs here is Los Angeles at on of world's "best" eye institutes.

Let us know what your neuro says. Is a neuro opth the next step?

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If I had the tests using the Spanish National Health System I would have to wait a lot, but I am doing them using a private insuarance that I am paying every month, it is very fast... In any case, the results of an angio are ready at the moment.

I have a question for the people in this forum, is a doubt I have had since all this bright spots appeared.. Is here anyone who had the permanent spots during a lot of time and then them desapeared spontaneusly??? I think when a permanent one is instaured it means it is a permanent lesion but I hope I am wrong and some day they will fade away...

Good luck with the ERG and mfERG results Calliope.

Best thoughts to you.



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I'm still hoping for mine to resolve one day ;) But it doesn't look like they are at the moment. My efforts are concentrated on figuring out what's causing the symptoms to prevent more permanent ones from happening!
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I've been getting spots since 1998 and none of the permanent ones have ever resolved, unfortunately.
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I had episodes of spots three years ago that lasted days and 1 episode that lasted over a week if I'm not misremembering. They went away but the longest lasting one was in the exact same spot on the Amsler grid as the huge one I've now had for 7 weeks. The smaller one above it has been here for 5 weeks.

I don't want to jinx myself, but no new permanent ones have formed since taking Valtrex.  If I have AZOOR, maybe I'll be lucky and find that Valtrex keeps any more from permanently forming. I still don't know if that's what I'm dealing w since I haven't gotten my ERG or mfERG tests results. I'm wondering with these weird retinopathies if they all aren't cousins to each other. Just as AZOOR was ink own until ESG testing showed photoreceptor malfunction, maybe there is another retinopathy that just needs an even more sensitive photoreceptor rod/cone test.

I also wonder if there couldn't be nerve damage on a micro level. Malfunctioning nerves that affect small parts of the retina. Or retinal irritation for lack of a better word on a micro level like Melinda mentioned earlier.

I'm starting back with my neuro acupuncturist next week. I'll let you know how that goes, and the test results if I ever get them.
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Oh, and I have a tiny spot in my other eye from 3 yrs ago on the periphery. It has never gone away. The others are paracentral.
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Just remembered, I think it's in this thread somewhere about simeone's aunt having one go away after a year.
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Still no test results?
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My appt is Tuesday. Honestly. It's been 9 weeks since this latest round of spots started. I'll post as soon as I know anything more. Nobody can seem to access my file on the phone and doc is always in surgery.
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Wow. Best healthcare system in the world (etc).

I hope you find some answers on Tuesday. Take care
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Officially part of the club. Normal ERG. Normal mfERG. All blood tests normal. No markers for lupus,sarcoidosis or inflammation. My doctor wants to keep me on Antivirals since I haven't gotten new spots since taking them, and wonders if what we all have isn't cousin of AZOOR. Ruled out AZOOR for me but those studying these weird retinopathies are beginning to suspect viral cause. He didn't think angiogram would show anything. I'm gonna get second opinion to torture myself but there you go.

I'll stay on Valtrex because if there's any chance at stopping more from forming I am all for it, and tolerating it w no side effects. My doc thinks this is a syndrome they just haven't figured out related to MEWDs, AZOOR.  The episodic nature really does sound like herpes viral reactivation, esp since most of us have chicken pox and HSV8, 80% over 50 have HSV1 w no symptoms and many have chronic Epstein Barr.

Since he studied w Dr Gass, the retinopathy guru, I trust him. Just hate that I don't know what to expect.
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One more thing: for those lurking with same problem, do not let anyone tell you this is a migraine variant. It's an absurd diagnosis not even based on what retinal migraines look like.

My advice: find a doc that will let you try Valtrex, especially if you had chicken pox, mono or have herpes type 1 or 2. Only way to know if you have them is to get blood test. Being asymptomatic means nothing. I've never had cold site in my life, or any lesions elsewhere, and I am HSV1 positive.
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Not cold site, cold sore. Sorry. iPhone. Best to everyone.
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Well then. I was hoping you were going to get some answers, but was kind of expecting this outcome. Frustration mixed with relief. I know that feeling.
I had chicken pox as a kid, no HSV that I'm aware of but I'll be sure to get tested. What dosage of Valtrex are you taking?
I'm going to have some blood work done in the new year - I want to check for ongoing inflammation. Did you have CRP and ANA tests?
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I took Valtrex 3 grams a day -- huge dose and also used to lower EBV in chronic fatigue. Now 1 gram a day ongoing as in the AZOOR study. I was tested for CRP and ANA -- both low normal.

There is also some interesting info about low B12 and scotoma/vision loss. If your blood work shows high MCH, could mean low B12. Often comes in people w celiacs or other malabsorption issues. My MCH was just over range and always has been. Wonder about that although it is completely unrelated to viral idea.

I would BET this is herpes related. They know so little about herpes viruses and we host so many versions in our body. I was dtunned I had HSV-1, with off the charts antibodies showing I've probably had it for decades and never knew. Often hSV caused major migraine-like headaches as it activates in spinal column, but no lesions. So many docs just think its classic blisters.

Get the Herpselect Elisa HSV test. It will show if you have type 1 or 2 or both. Most with either are a symptomatic, but I'm beginning to wonder if many migraineurs w no scintillating scotomas aren't just having heroes headaches. Again, a lot of "experts" scoff at herpes causing headaches but many friends w HSV report headache as prodrome and I have had zero headaches since starting valtrex. Odd considering how stressed out I've been over blind spots.

I get two kinds of headaches -- the ones preceded by scotoma, classic migraine. And these other agonizing ones that start in back of neck and make me feel kinda like I'm getting a flu. I think those were HSV.

My doc said all the studies they've done point to virus as cause of all these weird retinopathies. Valtrex won't heal damage already done, but stops new spots from forming.

Again, good luck getting doc to know about this but Valtrex studies easily found through PubMed. they are related to AZOOR but my dic thinks our spots are a similar retinopathy to AZOOR, not causing enough damage to be caught by current imaging and not affecting big swaths of visual field. Makes sense to me. AZOOR people were once big mysteries because they didn't show classic signs of other retinopathies.

Sigh. Nothing like being a medical mystery.

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Sorry. Typos again. I want to reiterate most people w HSV1 and HSV2 are ASYMPTOMATIC. But that just means not getting the classic cold sore/lesions. I just read a study that showed HSV acan and often shows up in every major organ in autopsies, leading researchers to believe they know very little about these viruses and how they really behave once in a host. Also, "symptoms" can be as mild as feeling run down, having a paper cut like lesion that heals in a day, etc.

My lack of headaches since on valtrex has been stunning to me. I've never gone almost 7 weeks without a headache.
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Sorry to keep thread bombing but also, EBV and Chicken pox have been implicated in AZOOR. So, Valtrex works on those too and if this is related to AZOOR, I hope it works for me.
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The virus theory is interesting, but the question then becomes why isn't it more common, considering the prevalence of HPV infection? And I still have niggling suspicions about the connection with migraine with aura. The overlap is too significant to disregard.
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To make the same argument, why isn't it more prevalent with the significant number of people with migraines?  My doc says all these rare retinopathies are likely rare response to viruses. Maybe it's a rare response to migraine but there is no cortical spreading depression in the retina, and retinal "migraine" is a much different animal and never permanent. True migraine aura is never monocular. So I wonder too why so many of us have migraines since it is completely unrelated to the retina where our problems clearly lie.

Also, herpes viruses are far weirder bugs than HPV or other viruses. I wouldn't be at all surprised if this were weird albeit rare consequence of a bug that does not do this to majority of people.

I will stay on Valtrex, and keep u all posted on whether I improve or if god forbid more spots form. I am also nervous about common viruses. Right now I'm catching cold and terrified somehow my immune system will mistakenly attack my eye. I know it's irrational but this latest round of spots has totally spooked me. So close to central vision.

I sometimes wonder if migraine itself isn't a viral response in the brain. Herpes may end up being cause of that, since it's so poorly understood and we host so many versions of it in our bodies, many "symptomless.". If it resides in spinal column, why couldn't it affect brain as brain/spinal cord are so closely related. I wonder if anyone has ever thought to study this. All any doctor ever says is that they don't know CAUSE of migraines.

Common HSV-1 is now known to contribute to Altzheimers. (That's a scary new finding)  Why not migraines?  I think the Altzheimers link is to ameloid plaques (I'm not sure of this, and not looking at study now) but could virus contribute to triggering cortical depression too?

Just thinking like a researcher again.
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CalliopeWoman: I certainly understand your frustration with some doctors making dismissive diagnoses without willing to investigate further, however, some of your statements about migraine are a bit categorical and I feel they need some additional debate, if we are to think like researchers and keep an open mind about what the causes of our mysterious condition might be.

* "There is no cortical spreading depression in the retina". That is not strictly true. Spreading depression can be anywhere where there are multiple neurons, and the retina is full of them (retinal ganglion cells). A quick Google search for "retinal spreading depression" brings up some information.

There is no agreed definition of migraine, as it seems researchers have not agreed on the causality in the relationship between spreading depression and vasospasm, as in, what comes first.

* "Retinal "migraine" is a much different animal and never permanent" This is subject to much debate. From the clinical research it appears that permanent lesions can appear in both classical migraines (at the brain level) and in retinal vasospastic conditions (using the "retinal migraine" term loosely here). If we define migraine as a vasospasm in the nerve tissue, then, given sufficiently prolonged deprivation of oxygen, the affected tissue will die and not regenerate.

* "True migraine aura is never monocular." There can be asymmetries even when there are visual defects at the visual cortex levels. See my earlier post about this publication:
"Monocular paracentral scotoma in occipital lobe infarction"
http://informahealthcare.com/doi/abs/10.3109/01658109008997289

One also has to take issue with doctors who say that one's retinopathy is so incredibly occult that no equipment (not even an mfERG test) can pick it out. Given how few documented cases there are of, e.g., AZOOR (in most of which there actually were measurable abnormailities in at least one of the tests, mind you!), that kind of diagnosis, although theoretically plausible, does not sound substantiated in a statistically significant way.

Conversely, there is sufficient evidence of permanent visual field defects in migraine sufferers: http://is.gd/E4ALcC ; form the abstract:

"Visual dysfunction that is selective for temporally modulated targets occurs in migraine subjects. The migrainous pattern of dysfunction shares some features with that identified in early stages of glaucoma and raises the possibility for a common precortical vascular involvement in these two conditions."

Unexplained vision loss is terrifying, but we need to keep an open mind, given that the medical profession doesn't have immediate answers for us.


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However, I certainly agree with your point about the causes of migraine. It's true that many conditions that were once thought to be idiopathic, or manifestations of stress, have now been found to have an external agent playing a major role in its pathogenesis. E.g., stomach ulcers (helicobacter pylori bacteria), some cases of heart disease being aggravated (or possibly even caused) by bacteria residing in the dental plaque around gums affected by gingivitis or periodontitis. I'm sure the same could be true for migraine.
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Sorry, my error. I meant to type HSV, not HPV (which I'm entirely clear of, somehow).
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To clarify my earlier point, and this is ridiculously anecdotal of course, but ALL people I am in contact with who have these spots also have migraine with aura. I'm not suggesting it is is common in people with migraine with aura, but that perhaps it is a complication.
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Remember, I have been following this issue for more than a decade and, lousy as my medical knowledge may be, I have been able to observe certain commonalities among those reporting this unexplained condition. Another is perfectly clean test results.
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Incidentally, I don't think I ever disclosed my details. I am 31, Male, in good health. My problems started about two years ago, give or take a few months. I have never suffered from classical migraine with aura, however, I have it on both sides of my family.

And here's an additional pointer to this condition potentially being of vascular origin: on a few occasions, when I had a violent episode of a really large bright spot in one eye, that looked like it was going to stick around for ages, and potentially even become permanent, I was able to make it go away by immediately undertaking vigorous exercise for about five minutes (push ups, punching a bag, doing really fast squats and jumps). Most recently, I was able to make one spot go away like this; it then returned about half an hour later, and I was again able to make it go away by repeating a bout of vigorous exertion. I am guessing that this temporarily enhanced circulation to all parts of the body and relieved the part of the retina/optic nerve from vasospasm. I think the key here was that the exertion was extremely vigorous and intense.
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P.S. and if it is vascular, then it kind of reminds me of another vasospastic condition that is exacerbated by stress and changes in temperature, and where exercise is advised to alleviate the symptoms: Raynaud's Syndrome

http://en.wikipedia.org/wiki/Raynaud's_phenomenon
http://www.nhs.uk/Conditions/Raynauds-phenomenon/Pages/Treatment.aspx
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This is the best discussion ive found so far on our collective problem. I'm just relaying what my retinopathy expert has told me, and theorizing.  Honestly, when HSV DNA is now showing up in brains of Altzheimers patients I think it's a gamechanger for research into EVERYTHING neurological.

There are a kit if things that can cause scotoma. It seems to me that if you can make one go away and come back with exercise, that's for a totally different cause than those of us that have them just appear and stay. And stay. And not change. And stay.

I'm not here to debate, just relay my experience. And I'll keep you guys posted as I continue to look for answers. Also, if I get no more spots not even temporary ones on Valtrex after a significant amount of time, that's gonna lead me to believe MY particular scotomas are viral oriented.  

I also want to see an ENT, just in case sinus pressure/chronic inflammation could be causing any if this. The few studies I read with that as cause are very interesting.

I stick by my comments about retinal "migraine." Google "most retinal migraines are not migraines" for interesting study/aggregation of studies.

I'll post after my second opinion with another retinopathy expert. Can't get in until January.

And let's all keep posting what we learn and are told by our various studies and doctor visits/tests.

Best to all.
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Hello guys!

I am glad you continue to post your opinions and findings on here.

I have an appointment with one of the most famous ophtalmologic institutes here in Spain. They will see me the day after Christmas (12-26).

My spots can appear at any time of the day, they can appear when I make exercise or when I am resting, but I noticed I have more transient spots when I wake up or get up in the mornings, and also I often have more spots after driving, when I get of the car. Something vascular? Maybe something caused by temperature changes? I don't know...





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When I monitored this thing more vigilantly, I'd keep records of variables surrounding the onset of a new spot. Had I eaten any MSG? My mood, the weather. The only commonality was that the majority of them appeared after a sudden drop in barometric pressure, particularly when I lived in a ski resort, right before a snowfall. Coincidence? Perhaps. But they you go. I also notice temporary spots when I have very low blood sugar. They look almost identical to the permanent ones except of course they resolve themselves. I've become quite good at telling the two apart.
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Soledad, I get mine when I get up in the mornings, or suddenly change the level of my physical activity (I get a lot of them especially when I'm in the shower and it's hot), Melinda, I also get them a lot when I have low blood sugar. Of course we could all have it caused by different things, but to me, this is definitely vascular. It's almost like Raynaud's disease, but instead of the extremities, for some reason, the visual pathways are affected!
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P.S. Melinda, I personally think the permanent spots are the temporary ones that took too long to resolve. My hypothesis is that the nerve fibres get starved of nutrients and die.
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P.P.S So there are at least three of us with a significant overlap of symptoms here. Surely, surely we can approach the doctors armed with the knowledge that we are not insane, and it's not all "in our heads" and try to get to the bottom of what would be causing this malfunction in our vision. Could it be raised intracranial pressure? Could it be autonomic dysregulation (like Raynaud's)? Could it be bacterial infection (gum disease spreading toxins, latent lyme disease?) What should we take for it -- beta blockers, calcium channel blockers, antibiotics, or just increase the level of physical activity to retrain the body to work properly? There has to be an answer!
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And could it be herpes related from ANY of herpes viruses We host? That's where the weird retinopathy research is pointed. And I've now read enough research now to make what's left of my eyes cross.

I was told that if nerve fibers die, mfERG would catch it.

I was told that permanent vascular damage would show up on angiogram
And/or optic MRI w/contrast.

I have been told that transient spots are classic vasospasm, or retinal "migraine" but do not cause permanent damage.  Usually resolve w/in minutes to an hour. Usually do not flash or scintillate.

I've been told that spots that appear when coming in from bright light are just retinal delay. Like some actual rods/cones take longer than others to adjust.

The true blind spots that do not change are different than the ones that come and resolve, from what I have been told.

Again, my retina guy is one who studied with AZOOR discoverer and expert on weird macular diseases and retinopathies.

If micro circulation is suspect, maybe nattokinase would help. Or ginkgo or bilberry. I'm tempted to add natto just for grins. At this point, why not.

I'm almost 12 weeks now since latest round. I've been on Valtrex almost 8 weeks I think. In that time my spots have not resolved but I've had NO new ones, no temporary ones, no weird temporary spots in paracentral region from bright light.  Yesterday? My worst permanent spot is showing some light activity in the center. Barely. I've also had no headaches and no migraine auras w/o headache. This is shocking to me. I wish just ONE curios researcher would use me as reason to study the heroes connection to not just retinopathy but migraine in general.

I'll keep you posted.

I really appreciate this discussion.

Best to all.

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Herpes. Not heroes. Sorry for typo.
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With just a cursory glance, I think intracranial pressure should definitely be investigated for your case, especially since you don't get classic migraine aura.

Melinda's symptoms seem most like mine. And I think I've stumbled across some of the others she's spoken with online whose symptoms are also like mine. They all have classic auras, too as well as spots that are just BLIND but not a constant stream if daily spots that come and go.

For me, I had the classic bright light when blinking spots a few years ago that resolved. But not daily spots that come and go.

What all of this has taught me is that the eye is far from understood. Kind of like the brain.

Here's to everyone figuring this out.
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Also, just to keep from having to scroll back, let's list our tests:

Spectral OCT
MRI with and without contrast
30-2 Visual Field Test
ERG
mfERG set to most sensitive hexagon settings
Bloodwork for chronic inflammation, ACE, C-reactive protein, TB, sarcoidosis, syphilis, CBC, metabolic panel, various cancer marker tests. All normal.

Blood test for HSV1 positive
Blood test for HSV2 negative
Blood test for Epstein Barr Virus. Positive.

No vitreous cells present
No sign of central serrous retinopathy
No white dot syndromes
No sign of vitreous tugging
No sign of vascular damage in retina
No lesions on brain on MRI

Whew.
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Melinda, been thinking about you and the barometric pressure connection. Barometric pressure can cause maxillary sinuses to swell (I believe it's those) and push against optic nerve. If you haven't gotten checked by ENT I think you should. That would be awesome/easy fix if you have chronic sinus inflammation that causes air in sinuses to expand and push on optic nerves. I read several studies as I mentioned about sinuses causing scotoma. Rare .., but then again EVERY known cause for permanent visual loss not attributed to stroke, macular degeneration, eye stroke or glaucoma is rare.

I'm seeing ENT in February.

Hugs to all.
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I've not heard of that before. But I've never had any sinus problems I'm aware of either. Still, it's certainly worth keeping in mind. Thank you!
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Just an update: after 7 1/2 weeks on Valtrex, the largest blind spot that appeared 12 weeks ago is definitely showing small improvement. What was gray, completely blanked out with flashing lights w/in in darkness and kind of oscillating fan/wriggly black in light spot that I could blank out street lamps and cursors on the computer with is definitely showing some light/vision in it. The smaller one that started a few days after the big one has not gotten bigger since the Antivirals. The permanent small peripheral one in the other eye has not improved, but according to the viral theory it wouldn't since damage is already done.

Now, when I read only few letters of word below is blanked out and can see more of word. Also, no new spots have formed, knock wood. Also still no migraine auras or headaches of any kind since Antivirals started. I used to get at least 1 aura w/o headache a month, often 2. I got weekly headaches, some lasting up to 24 hours.

Perhaps coincidence? Whatever it is, seeing even this slight improvement in large new blind spot is stunning. Still crossing fingers no more will form.

Also have had some herx-like reaction since taking Antivirals which makes me wonder if Epstein Barr isn't having a die off like people experience on this protocol for chronic fatigue. You can google herx, valtrex, EBV, CFS, fibromyalgia for info on that. I've had mild chronic fatigue symptoms for years.  You guys might also google scotoma appearing after viral type illness. Several studies. So, not just the herpes viruses implicated.

I'll keep everyone posted. Again, I do NOT get random spots coming and going all day or when I exercise. I've had episodic bright spots like flas bulbs that usually resolved in hours to a week with one that lasted. Starting 2 years ago. The one that lasted faded to permanent blind spot but I noticed it less being in periphery.

Best to all.
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I don't get random spots coming and going all day either.
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Yours and my symptoms are so similar, and do similar to the earlier threads two years ago in this thread. I believe Stargazer and Soledad are experiencing a different cause if they are having daily spots appearing and disappearing. This is nothing like my experience. I do have the spottiness from retinal afterburn from bright light and the "retinal delays effect of some photoreceptors not coming back as fast as others when coming in from bright day into darker room. But nothing like what Stargazer and Soledad experience.

Posterior Vitreous Detachment can cause a lot of flashers, but not scotomas usually. Surely Stargazer and Soledad you guys have been tested for that?

Also, drop in blood pressure causes the seeing stars phenomenon and that can come and go during day. That certainly is vascular.

I feel pretty confident that I've been evaluated by best of best (well, at least in the States) at Jules Stein. I'm fortunate to have a specialist who is up on latest viral theory so that if this IS cousin to AZOOR, I have SOME kind of treatment that might halt further damage. I am hesitant to get excited about my improvement but there IS improvement. My doctor said he's seen Antivirals work in small unexplained scotoma before, like it wirked in AZOOR, which is why he has me on it. I found one other woman online who had a doctor familiar with theory. Same symptoms of episodic (NOT daily) flashbulb like spots fading to blind spots. She want in Valtrex with new crop and resolved them in 2 months. Also, her doctor thinks classic migraines might be autoimmune in origin to either pathogen or hormones. Kinda goes along with my curious buy most NOT expert theory.

Good health to all. I'll check in if this continues to improve, or God forbid gets worse, and also after I get second opinion in February.  
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This is all very Interesting because at the beginning of this article I have what I think is similar to what some of you have is where when I blink I see a spot in my eye very small and it fades away rapidly after I blink only in my right eye and I've been to many opthalmologists and been told its normal its very strange because it also changes colors when entering a dark room from a light room also then fades away.
I don't know if its a very small blindspot, a flasher or just something to do with my brain no one seems to know.
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But my spot does not show up on the amsler grid unless if I blink or squint and I can see through It sort of then it fades away after squinting for so long.
(Not a floater I know what those are) because this spot is stationary.
Again all my docs say its just a phenomone and nothing harmful and I sure hope there correct
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My large scotoma from 12 weeks ago continues to improve. Today I can definitely perceive color through the center. the second smaller one above is reduced in size. I'm shocked and scared to be optimistic.

It this is viral and caused by one of The herpes viruses Valtrex suppresses -- chicken pox, EBV, HSV1, HSV2, HSV8 -- it would appear to be working. Mind you, the viral theory can include viruses Valtrex is not effective for and will not help scotoma thy have already caused permanent damage. I see no improvement in my permanent scotoma from 2 years ago.

The reason ERG and mfERG would show normal readings for this is because ERG picks up large areas or retinal dysfunction and even at smallest hexagon setting on mfERG if your area of Regina can perceive at least half of a hexagon (if I remember correctly) it will read normal. Smaller scotoma could be missed. Same with Visual Field testing.

This could be viral just not affecting as large an area as AZOOR, but related in affect on photoreceptors. Just much smaller areas.  Kinda like small patch of eczema vs large, oozing areas of skin.

I'm cautiously optimistic and I urge everyone to have doctors study work of Donald Gass and Antivirals on AZOOR and AZOOR-like retinal illness.

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Btw, that info about erg and mferg limitations is in link of mine further up from retinal textbook.
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You must not stop with standard opthalmologists. A neurologist and retina specialist are necessary to rule out what opthalmologists can't see and even then, as you can see by experience of me and others here, you still may not have answer but you would have ruled out a lot your opthalmologist can't see/isn't trained to know.

Best of luck to all.
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That's great news. One question: are you actually seeing through the scotoma, or is it your visual cortex filling in?
A good way to test this (at least in my case) is to shift your glance to something with a vibrant solid colour - red or blue seems to work well for this. With me, I will briefly see the OPPOSITE colour on the colour wheel in my scotoma before my brain fills in with the correct colour. This also explains why my blind spots are most noticeable against strongly patterned surface - the visual cortex struggles to fill in correctly.
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One more: how do you find polarised glasses? Help or hinderance?
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What you said about the visual cortex filling in is exactly what I get as well. I see the opposite color on solid colored walls or on the computer screen. That's how I knew something was wrong. My blind spot is very noticeable when it's up against the edge of a straight line or pattern.

It has been 10 weeks now (if I did my math right) and I still have the blind spot in my left eye. I think it has got slightly larger. I lost my insurance, so I can't afford to go to the doctors or get any testing done. At this point, I'm adding this to the list of things wrong with my body.

Hope everyone had a great holiday.
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Things to experiment to beat Idiopathic Central Serous Retinopathy (CSCR, CSR)>

I found that my CSR was linked to my inactive lifestyle and concomitant bowel spasms e.g., IBD (inflammatory bowel disease) like symptoms. I work on computer all day. I got constipation (stomach distension) at night. I had inconsistent sleeping patterns (often going to bed after 1pm and sleeping in daylight). I used to exercise by going on long walks at night just prior to bed to control constipation. My lifestyle was causing allot of nervous tension, constipation and CSR. I found that my nasal passages were almost constantly chronically inflamed (Rhinitis).

1) Quit doing things that aggravate the condition e.g., a) get to sleep earlier in the night so you sleep longer in the darkness b) Quit drinking caffeinated Tea, Coffee and regular doses of chocolate (e.g., at all costs avoid caffeine). c) Stop taking nasal sprays such as Sinex, Sudafed etc as there are reports that these kind of drugs are linked to CSR.

2) Most importantly of all for me: when I switched from a 3 meals a day with snacks to "Alternate day" fasting, my weight dropped by 6 kg, and my eyesight improved. Please understand: I am 6ft tall and I was 76 kg (well within the normal weight for my height). I have never been what you would consider fat. My normal weight is now 68 Kg-70 kg. I have not had CSR since making this switch. How I did this: Day 1) normal diet but lay off dairy products, cakes, icecream (anything that can cause IBD). Day 2) 1 piece of toast spread with margarine, covered in tomato, cucumber and lettuce- for breakfast and lunch (e.g. low calorie). Normal meal at tea time. Drink Redbush tea (decaf) to keep hydrated. This method of dieting only works if you always eat something at breakfast and lunch. If you skip meals during the fast on day 2, you will fail to get to sleep at night (e.g. absolute fasting messes with circadian cycles). I worked out I was eating about 2000 calories on day 1) and about 1200 calories on day 2). Calorie restriction is known to help stabilize the immune system (See the BBC Horizon documentary "Eat, Fast and live longer).

3) Foods to avoid: foods that slow the digestive system down... E.g. foods with a high combined sugar/fat content such as ice-cream, biscuits, pie's, cakes.. Also avoid eating too much citrus fruits as excess plant sugar irritates the colon.

4) Chronic Inflammation due to wrong exercise and sedate lifestyle was associated with my CSR. If you do exercise allot or if you sit about on a computer at work (like me) and so do not move allot, you will have muscular tension issues. Symptoms include twisted bowel (IBD), headaches, soreback, tight hamstrings/calf muscles, sore neck, feeling drowsy all the time etc. The only palliative (temporary) cure for this muscular tension is hot baths, sauna's, Jacuzi's, massage, sex and Yoga (or sports stretching), Pranayama (Yogic breathing control). All these activities bring down cortisol levels. In particular, stretching the lower back, abdomen, obliques and neck muscles will relieve the cause of the tension, but this must be done regularly to combat exercise and sedate lifestyle effects upon the body. Sex helps because testosterone has systemic relaxing effects upon the muscles... However, sex does not modulate the cause of muscular tension. If you use sex to cure CSR, you'll be constantly tired every day, get male pattern baldness, be more susceptible to colds (due to low zinc levels) etc. Like any drug, the effect wares off with constant use!

5) Drugs to help with CSR: a) lutein meso-zeaxanthin combo (40mg total) such as Macushield b) Nightly consumption of effervescent 1000 mg Vitamin C combined with 100mg of Asprin (300 mg if you are suffering a flare up) as a drink. c) The following supplements: Vit D, Combined Vit B supplement, Magnesium/Zinc, Potassium. d) Use 50mg enteric mint capsules (3 pills, 2-3 times a day) to relieve bowel spasms and constipation [do not use constantly, only when issues arise]. Avoid food/drugs that increase cortisol levels or modulate the HPA (Hyperpituitary Axis) causing increased cortisol.

6) Use of the following food stuffs regularly: Chicken stock (immune system booster), garlic (not garlic salt), Rosemary, Basil (any herb that reduces cortisol).

7) Eat slowly and chew your food properly.. This is great advice for IBD sufferers or those suffering from constipation. There are enzymes in saliva that help break down sugars whilst you chew. I you do not chew much, digestion is less efficient. Also, if you wolf your food down, you are asking for colon trouble.

8) Get a walk at lunch time and in the evening after tea. Restrain your walks to 30-40 mins maximum so you don't get sore legs.

9) Instead of jogging or walking a lot to keep fit, do weight training/conditioning exercises and exercise aerobically/anaerobically in short bursts of intense activity. This keeps muscular tension under control and will make you stronger and feel better.

CSR is not caused by one thing, but a multitude of lifestyle habits that combined lead to CSR. Thus, for me: the cure is to live like people who don't get CSR e.g., replace your western lifestyle. The biggest help for me was asprin Vit C, alternate day fasting and quitting chronic exercise types. I use stretching to get on top of my stress problem. By stress I do not mean psychological stress, I mean physiological stress (cortisol levels).

My CSR has stopped since I made these changes.
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Things to experiment to beat Idiopathic Central Serous Retinopathy (CSCR, CSR)>

I found that my CSR was linked to my inactive lifestyle and concomitant bowel spasms e.g., IBD (inflammatory bowel disease) like symptoms. I work on computer all day. I got constipation (stomach distension) at night. I had inconsistent sleeping patterns (often going to bed after 1pm and sleeping in daylight). I used to exercise by going on long walks at night just prior to bed to control constipation. My lifestyle was causing allot of nervous tension, constipation and CSR. I found that my nasal passages were almost constantly chronically inflamed (Rhinitis).

1) Quit doing things that aggravate the condition e.g., a) get to sleep earlier in the night so you sleep longer in the darkness b) Quit drinking caffeinated Tea, Coffee and regular doses of chocolate (e.g., at all costs avoid caffeine). c) Stop taking nasal sprays such as Sinex, Sudafed etc as there are reports that these kind of drugs are linked to CSR.

2) Most importantly of all for me: when I switched from a 3 meals a day with snacks to "Alternate day" fasting, my weight dropped by 6 kg, and my eyesight improved. Please understand: I am 6ft tall and I was 76 kg (well within the normal weight for my height). I have never been what you would consider fat. My normal weight is now 68 Kg-70 kg. I have not had CSR since making this switch. How I did this: Day 1) normal diet but lay off dairy products, cakes, icecream (anything that can cause IBD). Day 2) 1 piece of toast spread with margarine, covered in tomato, cucumber and lettuce- for breakfast and lunch (e.g. low calorie). Normal meal at tea time. Drink Redbush tea (decaf) to keep hydrated. This method of dieting only works if you always eat something at breakfast and lunch. If you skip meals during the fast on day 2, you will fail to get to sleep at night (e.g. absolute fasting messes with circadian cycles). I worked out I was eating about 2000 calories on day 1) and about 1200 calories on day 2). Calorie restriction is known to help stabilize the immune system (See the BBC Horizon documentary "Eat, Fast and live longer).

3) Foods to avoid: foods that slow the digestive system down... E.g. foods with a high combined sugar/fat content such as ice-cream, biscuits, pie's, cakes.. Also avoid eating too much citrus fruits as excess plant sugar irritates the colon.

4) Chronic Inflammation due to wrong exercise and sedate lifestyle was associated with my CSR. If you do exercise allot or if you sit about on a computer at work (like me) and so do not move allot, you will have muscular tension issues. Symptoms include twisted bowel (IBD), headaches, soreback, tight hamstrings/calf muscles, sore neck, feeling drowsy all the time etc. The only palliative (temporary) cure for this muscular tension is hot baths, sauna's, Jacuzi's, massage, sex and Yoga (or sports stretching), Pranayama (Yogic breathing control). All these activities bring down cortisol levels. In particular, stretching the lower back, abdomen, obliques and neck muscles will relieve the cause of the tension, but this must be done regularly to combat exercise and sedate lifestyle effects upon the body. Sex helps because testosterone has systemic relaxing effects upon the muscles... However, sex does not modulate the cause of muscular tension. If you use sex to cure CSR, you'll be constantly tired every day, get male pattern baldness, be more susceptible to colds (due to low zinc levels) etc. Like any drug, the effect wares off with constant use!

5) Drugs to help with CSR: a) lutein meso-zeaxanthin combo (40mg total) such as Macushield b) Nightly consumption of effervescent 1000 mg Vitamin C combined with 100mg of Asprin (300 mg if you are suffering a flare up) as a drink. c) The following supplements: Vit D, Combined Vit B supplement, Magnesium/Zinc, Potassium. d) Use 50mg enteric mint capsules (3 pills, 2-3 times a day) to relieve bowel spasms and constipation [do not use constantly, only when issues arise]. Avoid food/drugs that increase cortisol levels or modulate the HPA (Hyperpituitary Axis) causing increased cortisol.

6) Use of the following food stuffs regularly: Chicken stock (immune system booster), garlic (not garlic salt), Rosemary, Basil (any herb that reduces cortisol).

7) Eat slowly and chew your food properly.. This is great advice for IBD sufferers or those suffering from constipation. There are enzymes in saliva that help break down sugars whilst you chew. I you do not chew much, digestion is less efficient. Also, if you wolf your food down, you are asking for colon trouble.

8) Get a walk at lunch time and in the evening after tea. Restrain your walks to 30-40 mins maximum so you don't get sore legs.

9) Instead of jogging or walking a lot to keep fit, do weight training/conditioning exercises and exercise aerobically/anaerobically in short bursts of intense activity. This keeps muscular tension under control and will make you stronger and feel better.

CSR is not caused by one thing, but a multitude of lifestyle habits that combined lead to CSR. Thus, for me: the cure is to live like people who don't get CSR e.g., replace your western lifestyle. The biggest help for me was asprin Vit C, alternate day fasting and quitting chronic exercise types. I use stretching to get on top of my stress problem. By stress I do not mean psychological stress, I mean physiological stress (cortisol levels).

My CSR has stopped since I made these changes.
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Its funny I have been tracking this forum for a few years.

Im 28 year old healthy male from the UK. Dont take drugs, I dont smoke, I only drink socially. (Although i do have gilburts syndrome - A non serious minor liver inefficiency to brake down dead/used blood cells that requires no treatment)

Please read below, I have been giving this some strong logical thought. I hope what I write maybe of help!

This is my short story. After four to five years ago I noticed that I suddenly had a flash of light to the left of my central vision in my left eye. This would be noticeable when blinking. Id blink and the flash would fade quickly as if nothing was there. I was a chef and under very stressful conditions at the time plus hot lamps and aluminium reflect very bright light. I thought maybe this was a cause. The flash was like the after image of a camera flash but would fade after blinking, or looking at different contrasting colours. Similar symptoms to the people on this forum. After a while the flash will get smaller and go a grey, dull colour. Its more noticeable in artificial light or looking up at blue sky, bright white wall and blinking, ect ect.....

First I seen a GP, who then suggested I get my eyes tested and to come back if it didn't go to be referred. But again the dr didnt think it was anything to be worried about to much. I went and see a optometrist who took me seriously and gave me a very detialed exam. He then told me not to worry about it and the symptoms that I described, he didnt think it would be anything serious enough to refer me, he told me it would eventually go away and that my eyes were in perfect health and that he thought it was just an isotopic phenomena. Even though during the exam I did have a very small blind spot showing up on the amster grid which I alerted him to.

The small blind spot went away, I completely forgot about anything to do with my eye then about six months later. I woke up one morning, and there it was. Again, optometrist, eyes healthy, nothing. Although this time no little blind spot. And yes it went away. Thought nothing more of it.

After having these "episodes" for the last four to five years, i get them about every 4 months to a year and they last from a few mins (if i eat) to a few days. I cant help but notice I get them when im going through a stressful time in my life at that point. I also get these "blinking spots" when I dont eat properly. Which is interesting because when I eat it goes away. (no joke!).

However this is not all the time and these spots can show up in different places, only ever in my left eye.

Having this for at least four years and for it to be intermittent and the fact i dont have any other symptoms at all and im still alive! I gather that it must be something that is nothing as they say.

A few positive facts:

- Any eye disorder that was degenerative would of shown other signs by now.
- Anything to do with the brain would more than likely not be so localised, especially with it being monocular and the amount time that has past with no other symptoms.
- I have at great length studed (Although be it through the google) and researched almost every eye disease and its possible associates.


Although I have had a recent new one come up about ten days ago. This is in my left eye, in my peripheral vision at the bottom and to the left slightly. Again exactly the same behaviour as the rest. Going through a stressful period with exams as im doing a degree, also sit at the computer eight hours a day on average. The bright light no matter what doctors says just cant be good for your eyes consistently.

It only reacts in certain light conditions, it does not appear of "flash/flare" at night or in a dark room. I can walk around in the daylight outside and not notice its there. However twilight or dim light rooms with bright TV's, monitors it will show up.

Going to see the optometrist and get his/her opion. If im refered then great, if not then no worries. Also this seems to very common, many forums and people posting the same symptoms.  

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Following up after my second opinion w another retina specialist.

It's been almost 4 months since I went to the ER with the big spot. The second one formed shortly after. As mentioned, I've been on Valtrex all this time by my first retina specialist on the chance that these spots are viral like Azoor.

My second retina guy immediately wondered why I hadn't had flourescein angiogram. He looked and looked in my eyes with the slit lamp and the magnifying goggle things longer than anyone ever has. HE said he saw two tiny whitish dots in the exact region of my big spot but that they weren't cotton wool or MEWDS and that the new OCT and angio would reveal more. He also had me tested for Lyme!  but used the standard Elisa test which two I know WITH chronic Lyme came back negative. This doc said he had one weird case turn out to be Lyme, another turn out to be from the bacteria that causes Cat Scratch fever. Starts w a B. I forget. Bartolla? I was tested for that and  tested for histoplasmosis and genetic markers for birdshot chorioretinopathy  and ankolyzing spondylitis!!!

Annnnnnnd, everything came back normal.

Normal angiogram, normal OCT, negative blood tests. I do, however, want to get the more sensitive Lyme test since I have been hiker in Lyme country for years and know four people w chronic long term Lyme disease who all  tested negative on the Elisa. I had not considered Lyme at all until now but if retinal cells can be attacked by viruses they can be attacked by other pathogens and this bewer doc said lyme can behave so strangely with eyes.  Also, I've been sleuthing around a lot of message boards clicking on users who have posted about these spots to see what other health conditions they post about. Several post about dizziness/numbness symptoms a few years AFTER posting about spots, which coukd be Lyme.  Could also be MS which often starts as episodes of optic neuritis.  

Melinda, in ten years have you noticed any weird other body symptoms?  I definitely have CFS and fibro issues which initially improved on this antiviral therapy but have gotten worse since I went on the lowered dosage. I wonder. could just be coincidence or hormones or stress too.

I'm having the first massive neck headache since starting Valtrex, but im also on the lower dose than before.   all the talk of pathogens possibly being cause of all this has just made me paranoid I'm going to get another spot weeks after any unexplained headache.  Have any of you noticed new spots occurring within days of odd, lingering headaches or viral-like symptoms or after a cold? I was always so headachey I could never make that connection. Plus, like many of you I also get classic migraine headaches AND aura without headache.

My second retina specialist could not explain the tiny white flecks he saw since nothing correlated on imaging. I've seen two other posters on other threads mention someone seeing tiny debris stuck to the retina and not knowing what to make of them. Both said other doctors had missed it, like my experience.

Of course, my new guy offered NO hope or suggestions, just come back if it gets worse. He said this us not retinal migraine.  Knew that.  Said it could be viral like my other doc said.  Said that structurally they see nothing -- like we have all been told.  

The improvement I saw in the big spot weeks ago seems to have halted. It's still a big blind spot, but I can see tiny flickers through it occasionally. It also still "flares" when my eyes are closed. It's like the retinal cells there are firing, just not putting info together right. It still looks gray on bright background and bright when I blink and my brain fills in the colors pretty well unless I shift gaze quickly like Melinda. I can really study this one and the smaller one above when reading with just that eye. The big one makes jibberish out of words below and the smaller one partially obstructs a letter above. I can no longer shoot photos through a viewfinder with that eye but so far my binocular vision makes up for it in daily stuff.

I'm really tired of worrying about this. I'll post again after other more sensetive Lyme test and the consultation with the ENT. Also, whenever I can get into see a neuro opth. I don't know if optic nerve damage causes flashy spots. Was under impression those are always within retina and optic nerve ones are just dark. I had nothing amiss on MRI and am probably grasping at straws.

Maybe SOMEONE will be curious enough to want to study us. I'll bet Valtrex would fund it and at least then research could be done.  

Hope you all are well. This has caused major havoc in my life.  I can't stand the idea of another big spot.

Oh, and I haven't noticed polarizing glasses to help. My biggest problems are looking at computer screens, not being outside. I only have polarizing sunglasses.
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Just to clarify: I know four people with chronic Lyme problems but only two who tested negative on Elisa. They both said to get the more sensitive test. None had disease manifest with eye symptoms but all had different symptoms so it's another rabbit hole to fall into.
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Interesting read, when you mention ms and optic neuritis im almost certain they would of picked this up in most of your eye examinations. Optic neuritis also clears up from 3 / 9 months according to most medical journals.

My spots seems to get better over time and eventually goes however my most recent is a bit more stubborn. Im giving it 2 - 3 weeks and then im going to book with an eye doc. But im almost certain any tests will be negative.

Its more annoying than anything else, Although i do not get the blind spot that most of you are talking about I just get the grey flash, when i blink or look between contrasting colours. It could most certainly be some viral phenomena. I also cant rule out some sort of link between these and migraines. As we all have/had these. Although I grew out of mine when i was 16.

These links have been posted before on forums but they make an interesting read.

http://www.cmaj.ca/content/173/12/1441.full
http://en.allexperts.com/q/Ophthalmology-Optometry-979/spot-vision.htm?zIr=5
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My neuro said no signs of MS on my MRI. Not all optic neuritis is MS though and isn't retrobulbar involvement not visible on retina exams?  My point was that several people posting about this have gone on to find they had MS-like symptoms which can also be Lyme symptoms. Hence my looking to get more sensitive Lyme test. One of my friends was told she had MS for almost a year before it was correctly diagnosed as late stage neuro Lyme. And no, she had no eye symptoms but other Lyme sufferers have. So, it's now part of the puzzle in my opinion. Also, my friends have all been diagnosed in late stage Lyme, meaning maybe decades after exposure before big symptoms appeared.

I've read those links before. I'm so frustrated with doctors who say just ignore it because while my first ones were small enough to ignore, this huge one is right next to direct central vision and has already impacted my ability to shoot pictures and clearly edit them.  It's part of my business now as a multumedia journalist. One more overlapping in the other eye and I will not be able to work. One GOD FORBID in central vision and I won't see faces or read with that eye. so while I'm glad I don't have a brain tumor or MS or macular degeneration, I don't know if I'm going blind. My big spot that started 4 months ago is the size of an almond held at arm's length if I'm looking at a ceiling, in the 4 I clock position of Amsler just 2 squares from center focus.

I'm concerned because there seems to be a progression of starting with smaller ones that either fade completely or are in areas far enough out not to notice when the brain fills in. Then, in a few years, getting a really big one or more. Melinda is the poster I've noticed with symptoms most like mine and she's been dealing with this for 10 years without central focus involvement which is encouraging. Most other posters don't stick around long enough to track, but if they do post again it is often a few years later with neurological symptoms on other forums. So, I really wonder what is going on.

I'm also intrigued that I and several others have had one doctor see "tiny gray or white flecks" in area of blind spots that other doctors missed.  My recent  doctor just ignored the finding but I wonder if some debris is there, what is it?  I have asked every retina specialist if this could be something to do with vitreous getting stuck to the retina and they all say no but someone in another post had a regular opthalmologist say yes to that question. Then again, these doctors tend to talk out of their ***** if they don't have a standard box to check.

There ARE conditions that you could discover on exam like the white dot retinopathies or CSR and more so get the exams but not just a slit lamp and optometrist saying "oh, your eyes look great." at very least get an OCT and visual field test.  Preferably an MRI with and without contrast if those are clear. Otherwise you really haven't been checked out. Standard fundus exams miss a lot that can be diagnosed with right tests.

Most of us here have had all the tests and still have no answers but a few up the thread had true Azoor, CSR, MEWDS and others.

I will definitely keep posting my results. I'm asking my regular doctor for the iGenix Lyme test tomorrow.  His practice uses it and he's up on current Lyme research where many other doctors won't even acknowledge chronic Lyme.  I see my first retina specialist in two weeks and will see if he can see anything on the flourescein angio that the other doctor missed. That's another thing, so many doctors GLANCE at these scans or barely look with the slit lamp. Our spots are relatively small and defined compared to many vision loss pathologies affecting bigger areas so I sometimes wonder if they are looking closely enough or with enough attention to detail to actually see a problem that shows up on these tests, or just looking for the huge stuff that isn't there.

Good luck to everyone.
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No, I don't have any other weird symptoms going on. Certainly no numbness or tingling. As for lyme, I am Australian and moved to the US after my symptoms developed. There's little evidence that Australian ticks carry lyme, though of course there are those who contest it. In any case, I grew up in the center of urban Sydney and don't recall ever even seeing a tick.

From what I've been told, optic nerve disease manifests in an absence of vision, not the manifestation of a noticeable positive scotoma, which is why it's so insidious - people simply aren't aware of a problem until vision loss is very advanced.

As for dealing with the fear of blindness and the unknown, I too spent years feeling paralysed by this condition and the what ifs. I left my job due to the stress and anxiety. (I was a journalist and magazine editor.) But it's so utterly self-defeating. I look back at all the energy expended and time wasted on worry, and could kick myself. When my worry was at its worst, I became very life-avoidant and isolated. I was fearful to open my eyes in the morning, I found it hard to eat, to interact socially, to live in the moment. I was endlessly distracted and googled and researched compulsively. Now, I still have moments when the fear grips me, but mostly I just get on with it. I view this eye problem like I view any of life's other uncertainties - the cancer I could be diagnosed with next week, the car accident I might have next month. Yes, I could get a big fat blind spot in my central vision, but what if I don't?
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I really do think whatever this is its benign. Its been going on for to many years and to many tests if it were something of importance. I'm going to see to my GP this morning to see what he says or if i get referred, even though I have been to two optometrists and gave them no concern to refer me, after a long slit exam and peripheral perception test. (btw optometrists are different from the ones in the US here in the UK) Had this for about 4 to 5 years. Its more annoying than worrying for me although I do get obsessed with it. lol.

Il keep posting if any news comes available to me. There also seems to be a high number of people with this, i notice on yahoo answers and other forums many people are posting the same symptoms as me but to no avail.

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Yes I can relate. Sometimes I worry what is going to happen, but then as Melinda says, if I start to waste all of this time and energy on it, that isn't good either... I suppose my concern is that I still don't even know what is wrong with my eyes at all. I could have positive tests, but nothing was tested.... If that doctor had done tests while I had health insurance, then I'd feel a little better about it. I have no way to pay for a doctor visit and the tests now..I'm kind of stuck between a rock and a hard place.

The newest symptom for me is that black text is actually looking blue at times. For example, as I type this message here, some of the letters in each word are dark to light blue instead of black. It's really odd and I can't find anyone talking about this online. I am also seeing a lot of blue spots in the center of my vision when my eyes are open or closed. This started just a few days ago. I'm praying this isn't the beginning of a new blind spot. I have no idea how my spot even started because I went to bed one night with normal vision and woke up the next morning with my blind spot.

With POTS, I have some neurological symptoms. They have always been on the left side of my body and that is my bad eye too. I get tremors in my left hand if I get overheated and I feel really sick until I cool myself down again. I've always had heat intolerance with POTS though.

I'm sorry to hear all of your tests came back negative. That is SOOO darn frustrating. I've heard "normal" so many times myself, yet I'm very sick and disabled. Eh!
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Just been to my GP. He thinks its some sort of migrainal phenomena. However he is writing to a neurology specialist to get his/her opinion. So it looks like il be referred, probably to an opthamologist.

Birdlady159, sorry to hear you cant get anymore treatment/diagnosis. That is really bad, i know we moan about the NHS here in the UK but I think we are lucky to have a good health care system. You sure there is absolutely nothing you can do?
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Oh Melinda, I wish I could get past this. This morning i woke up and saw that my smaller spot that appeared just after the big one that sent me to the ER four months ago is definitely bigger.  If I close my "good" eye, I already can't see one eye on someone's face when I'm looking at them from a close distance. It's so terrifying I don't know how to get to a better place. I had thought maybe it was viral like my one retina specialist guesses but even it it is, Antivirals can't stop viral replication, just slow it down. Also, it seemed like I was showing improvement and then went back to how it was, now worse.

Now I am going down the Lyme hall of mirrors, getting the controversial test that is more specific than the simple Elisa usually given here. My friends with Lyme insisted it was the only way to rule it out.  I get that at my GP's tomorrow. With my luck I'll have Lyme and it will have nothing to do with my eyes.

I've heard the migraine variant, Stupideye, and frankly think its wrong for our cases. It doesn't fit retinal migraine as explained now by two retinal specialists and my neurologist said its unlikely traditional migraine since it is monocular. But who knows?  I've read about persistant retinal migraine without infarction but those aren't supposed to be permanent, and not supposed to flash or shimmer. But again, I feel like I'm lost here since doctors don't seem curious enough to figure this out. I would want to solve the puzzle if I saw only one of these comments and I was a doctor, much less the dozens we can google. I wouldn't say this is common, but the Internet makes it easy to gather oddities from all over the world and we have a small but significant group with a lot if EXACT same symptoms, perfect tests and either no answer or toss off guesses.

This has already impacted my life, whether it's deadly or benign, progressive or not. I can no longer use a viewfinder as a photographer. I did a lot of multimedia video work as a writer in the last five years and have a side business as a fine art photographer and I just can't see well enough to shoot or edit. My "good" eye has astigmatism and is never tack sharp focus. The big chunk and growing smaller chunk out of my vision in my other eye has really diminished my ability to see.

Bird lady , I'm worried about you. It really sounds like you need to at least get a slit lamp exam to see if you have and macular degeneration or something easily seen. I wish I could help. Don't get me or Melinda started on our health care system. It's absurd that money should be an issue about something this serious with your health.

When these things would come and go and were small, I was much more cavalier about it. None of them were so big or central or seemingly permanent. Melinda, I wish I had your strength. I can't get away from this gripping anxiety. I have a 7 year old. I can't imagine what I'll do if I can't see.  It's always a thought in my mind as I constantly see that big spot nobody can figure out.

I often wonder if we aren't experiencing vitreous liquefying in a different way than others. Several have now had doctor's either see something tiny on the retina (my second doctor just dismissed it without answering whether it could be the cause) and others have mentioned an optician saying  "attached floaters" which I can find NOTHING in literature with that term, so have no idea if that is possible but wouldn't it be a nice explanation, with the hope that all those spots would go away when we all finally have vitreous detachment?  

I'm also looking for a neuro opthalmologist. Seems like someone should take a look at the retrobulbar part of my optic nerve. My neurologist basically glanced at my MRI and read the radiologist report that said "normal brain" but nobody really looked at the optic nerves other than to say I didn't have lesions.

I'm totally freaked and depressed. It's nice to have this board. Hugs to all.

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I was thinking, I wish I could do a short documentary about all of us. If u could see well enough to edit it. Anyone interested in sending in video of their story and maybe I could get local interest here in LA.  Mystery disease always sells and maybe it could raise awareness. Bu t I'm sure most people don't want to show their faces or be public. It's just a thought, though. I want to find a researcher interested in this.
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This weird blue thing is freaking me out too...When I initially saw the doctor he did a slit lamp exam and said "everything looked good". He said my optic nerve was normal, macular was good and could not see anything wrong with my eyes. The retinal traction and white without pressure was still there. He noted again that my retinas look more "iridescent" than most people's. This has been the case for many years and he said it has not changed though. So I had no new info. My heart sank because I knew I was missing vision, but had no new info. He was telling me this as he was examining me. But then he started to look at a specific area back and forth. After about 2-3 minutes of that, he said there was a white spot in one area of my retina that would coincide with the blind spot. I guess I was happy. I thought he was going to order tests (Visual field, OCT, ERG), but he said to just come back in 2 weeks.

I started looking online and obviously white dot syndromes came up in my research.

I called their office the next day and told the nurse that I would not have insurance in two weeks. If there was any way to get tests run before the end of the month, I'd be happy. I told her to run White dot syndromes by the doctor too if she could. The nurse was mean. She yelled at me for calling in and questioning the doctors "expertise" and told me I'd have to wait for 2 weeks. So nothing else got done. I had an appt schedule, but could not go because I knew I'd have to self-pay in the office. It was not possible.

I was thinking about getting my records from there. They took pictures of my eyes as a "base line" to see if things were progressing. I guess if I still had insurance, this would have been fine because I could have gone back to get more pictures. Insurance just got too expensive and we could no longer afford it anymore.

My blind spot is not as close to the center as yours. If I look at someone, it hits the very top of their head/hair, so I can still recognize the facial features of people. I really do feel for you.

If things get really bad, I will ask my mom for some money and go and in the very least get a slit lamp exam done. I will probably not go back to the same doctor though. I just did not feel he was that good.
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Oh CalliopeWoman, I am not strong at all. I just don't want to look back on another decade and regret the chances and opportunities I didn't take because of fear. I suppose I've employed a kind of version of Pascal's wager. If I get to old age, and I can still see well enough to function, then what would have been the point of all those years of slavery to fear and anxiety. If I'm blind, at least I will have memories of all the things I did do, rather than only regrets about missed opportunities and not making the most of my sight when I had it. A pretty lame philosophy, I guess, but I truly can't see an alternative, apart from surrendering to the dread.
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It's a beautiful philosophy. Not lame at all! :)
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Dont get down, Chin up! Dont let it beat you.

I talk to my spot as if its the enemy or someone annoying me. (not out loud! lol). I dont have the same symptoms as you and birdlady. Mine are the same as astroturf that started this post 3 - 4 years ago. I think it is fairly common phenomena from the research I have carried out with the symptoms that I have. I just think its dismissed, or eventually ignored. Its odd you have had all these tests which have not revelled anything. I hope you have lyme just because you know what you got and its very treatable.

Mine is changing overtime I think its slowly fading or going. Just like the others iv had, the doctor kept asking if it was in my left eye or just my left peripheral vision. Even though it is defiantly in my left eye. I honestly believe that what ever you two have is benign. I think it is very annoying, there is obviously a cause. I mean I know we moan about doctors but you have had a lot of tests. For them to miss something is very very remote. Have you actually sat down and talked long and hard about what this could be with you doctors. Asked question about possibilities. Im sure if it gave them concern you would be notified of that.

Although the main reason isnt whether this is going to kill you. I think it about the blind spot and the way its impacting your life. Try thinking out of the box about health care. Im a mature degree student and have access to thousands of medical journals. Non of which that I have relates to our acute visual problems.

So.... What do your partners or family says about this when describe it. The other that i can do is create a dedicated website or blog for us with these eye ailments. Maybe that could bring together more people with similar symptoms.
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This one of many forums that keeps cropping up in my research. It may give a slight piece of mind that there are others out there with the same or similar problems.

http://ask.metafilter.com/143167/Vision-Anomaly-or-Ordinary-AfterImages
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I don't think anything that makes you lose vision is benign.

"For them to miss something is very very remote."

Ok I had to reply to that specifically. It's important to know that doctors don't know everything. I went undiagnosed for years with POTS. My own sister was told she was nuts and crazy yet she ended up having a malignant brain tumor. So yes doctors can and do miss things.
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Please dont take offence,

I was merely stating that it still is unlikely after having a high number of tests. I believe if after having a number of tests, if nothing is concluded then its best to go with doctors advice. However, in your case then it is not acceptable. I feel for you that you cant get anymore tests.

I'm sorry to hear about your sister. I'm not going to comment on something as dreadful as that.
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I didn't mean to bring up something so dreadful. I'm just saying don't put all of your stock in doctors and their abilities. Doing that might be very very devastating and the person who has to live with the consequences of it, is you; not the doctor.
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I have to agree with birdlady. There is nothing "benign" about vision loss, no matter how many tests come back normal. That just means either there are no tests yet to diagnose this disorder. I believe Melinda and I have now each had add all imaging tests FA, ERG, mfERG, MRI with and without contrast, Visual Field, OCT, and more slit lamp and funduscopic exams than I can count. Not to mention all my blood tests. But I can't just go on my merry way because I am losing vision and already can't do part of what WAS my job. These are not a few scattered tiny spots I can call nuisance like when this started 2 years ago, now almost 3. I have a big blob just off center of focus with a smaller one above getting bigger.

I was a medical copywriter and health journalist for years, as well as my parents' advocated and researcher as each lingered with terminal illness and died. Believe me, doctors make COUNTLESS mistakes & misdiagnoses even with most easily understood cases. Example: three doctors swore my mother just had anxiety. Tests, tests and more tests later: it's anxiety. Wrong! She had lung cancer and died from it.

A neurologist told me my father was brain dead and we should pull life support. That he was "gone" mentally. We didn't. And he wasn't. And he lived 12 more years.

We can't go around thinking all doctor's are idiots or careless jerks but we can be realistic and never just accept "don't worry about it, your TESTS are great!" when our symptoms persist. Especially symptoms like vision loss.

I may never get an answer but I am certainly going to exhaust all medical avenues and then, with perfect tests and failing vision, try to raise awareness of those of us who are true mysteries. Birdlady and Stupideye, you guys may have easily identifiable disorders if you get all the testing. Not all mystery spots turn out to be mysteries.

Stupideye, you may just have central serous retinopathy which will be easily seen with right tests. You're early in this game. But if you come back after months (or years) with nothing conclusive and blind spots so big they affect work or driving, it would be a different story.

A friend of mine mentioned that she knows someone whose young son has exact same issues and, like me,  all tests have come back "normal." But if he can't see well enough to read after  spots overlap in each eye, is it still something to just ignore?  This is not anything benign, no matter what our patient files say.

I know doctors can't work miracles or test something they have no test for but the careless, arrogant "must be okay if my tests say its okay" represent everything wrong with our current medical model of relying solely in diagnostic testing instead of listening to patients. Also, I know most in private practice just don't have time to figure out curiosities. That's why I'm thinking maybe a teaching hospital is the way to go. Find doctors anxious to make their mark and publish.

I'm not being confrontational, just passionate. I want to SEE my daughter grow up. I want to be able to drive or our family will be in serious trouble. We do not have the means for me to become legally blind. And while I take comfort in Melinda going over a decade retaining center of focus, I've recently found another woman online with all good tests, baffled specialists, same spots only one appeared dead center in one eye and she said this is a total game changer. So, I guess it is possible to get them centrally.

I want to have Melinda's attitude of living life to the fullest, but just accepting the inevitable decline of my vision while doctors dismissively tell me how great my tests are is not okay with me. There has to be a researcher somewhere that is interested in cracking this. Something organic/mechanical is going on. Remember, before High Res imagine doctors couldn't diagnose many things. Heck, before germ theory doctor's told people their illnesses were from bad spirits. So, my faith in the absolute word of doctors is, at best, respectfully suspicious.

I wish all of you good vision and good health. Please excuse the rant. As I was writing this another spot just flash appeared in my good eye. I'm falling apart. I apologize. Best to you all and I will post back if I learn more.
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You're in a dark place right now and I want you to know I have absolutely been there. It feels a lot like drowning (and the quest for an answer is a life raft). But you MUST ready yourself for the possibility that you may never have an explanation that satisfies. It may remain a mystery. I suspect that whatever is going on with our vision is happening at a molecular level and I believe, given the tests we've had, that it is beyond the confines of current medical knowledge.
Also ask yourself this, will a diagnosis be enough? Because chances are this thing is not treatable, let alone curable. At some point, there must come a level of acceptance - whether it's of the "not knowing", or of the vision loss itself. There will come a point where you hit a wall. I'm not at peace with it either, it's frustrating as f*$k, but I have accepted that my life can't go back to "before" this happened and it is what it is (that's about the only platitude grounded in truth.)
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My heart really goes out to you. I can feel your frustration in your words.

From everything I have read, there is no treatment with this stuff even if I were to be diagnosed with one of the white dot syndromes. It sounds like treatment hasn't proven to be helpful in most cases.

I have POTS which is incurable. For years I tried to get more and more tests run to find out the underlying cause. It never happened. I tried treatment options, but those were not helpful either. So after some time I had to "accept it" and move on with my life. Moving on with my life consisted of accepting the fact I can't do a lot of things that I've wanted to do. I suppose what you are going through right now is grieving for things you can no longer do. I understand this completely. It causes a mix of emotions that can change at any moment. Unfortunately the grieving you are going through, I had to do many years ago. It never gets easier. Sometimes I am angry, sad, calm and then it can quickly turn into anger and sadness again.

Pray for healing. This where I have been heading. After 12 years of medicine (both mainstream and natural) failing me, I look to God now. No one else can help me with these things.I will keep you in my prayers. <3
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Birdlady, CalliopeWoman, Melinda, I feel for all of you. I think that whatever it is that we have is beyond the limits of current medical knowledge and the diagnostic tools available. It is probably of little help, but I'll just air my own thoughts on this after coming to terms with the fact that no one will be able to tell me what this is or how to stop it.

This whole thing started for me at the time of incredible stress, fear, and, dare I say, anger. I had never been in a state so bad as I was then, and I do think that the trigger was emotional and that now I am somehow 'stuck' in this state; my body can't remember how it used to function before. There are some interesting books which helped me put my condition in perspective:

"When the Body Says No: Exploring the Stress-Disease Connection", Gabor Mate
http://is.gd/SuEnwQ

"Codependent No More: How to Stop Controlling Others and Start Caring for Yourself ", Melody Beattie
http://is.gd/dlzrU7

The titles are misleadingly simple, please take the time to read at least the reviews of these books: I believe that the issues mentioned there contributed to the shift in the health of my vision.

One other very important book:
The Mindbody Prescription: Healing the Body, Healing the Pain by John Sarno
http://is.gd/Z0RQ1a

Sarno's hypothesis about undiagnosable causes of pain is somewhat similar to Mate's more general hypothesis about progressive disease and its relationship to anger. Specifically, however, he talks about reduced oxygen supply to various tissues when the subconscious self rebels against whatever we consciously impose on ourselves because we feel we 'must', however much we don't want to. The only thing is, reducing oxygen supply to the eyes *will* cause lasting damage to the optic nerve (that's the reason Glaucoma is not reversible), so it could be that we are just unlucky enough for our bodies to have chosen our eyes as the target of this 'rebellion'.

But more importantly, given that the doctors and their machines don't have any answers for us, maybe we can use the energy and the drive that our anxiety gives us to explore the possible underlying emotional causes. They might not be there, but again, framing this in Melinda's "wager" terms, it's something that the doctors can't do for us while we ourselves can.

One last word, I am convinced there is hope. Watch the TED talk about how one woman beat Multiple Sclerosis by changing what she ate. (This is a medically confirmed fact and is currently "unexplained" by the "establishment"). She literally got off her wheelchair, something completely unheard of in her stage of MS.

http://www.youtube.com/watch?v=KLjgBLwH3Wc

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P.S. In the nutshell, the impression I get from reading the above books is that there seems to be a cycle of negative thought patterns and feelings that the authors believe leads to ill health (in one way or another): Guilt --> The feeling of having to sacrifice yourself to redeem yourself --> Anger at the sacrifice --> Anger at the cause of your sacrifice (the person whose needs you are putting above your own)  --> The feeling of guilt after feeling angry --> Back to square one. I'm sorry, I know this is now going far beyond the medical issues of vision, but I hope it helps, even if tangentially.
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For Those who only see one small bright spot when blinking in their eyes and its only one in you're left & right eye this is a completely normal phenomena according to my doctors they believe that it's just that certain spots in your eyes don't register 100% in some parts of your visual field.
I realize that some of you have more severe symptoms but if you have what I just described its most likely normal.
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If you have that small bright spot when blinking do the spots change color when looking light to dark? If so it could just be a normal blindspot or just a phenomena

But if you're all talking about seeing huge black spots blocking vision like covering half of your visual field then that's not normal and you should see a doctor ASAP.
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OMG I had the exact same thing you have AnexietyMan & what Astroturf had 3 / 4 years ago its when you blink I have a very small spot in my right eye vision and it looks orange when outside and white on black sometimes.
Then as soon as I started to ignore this small bright spot it got less and less noticeable to the point it's barely noticeable

I believe if you all have what Astroturf and AnexietyMan have that this will go away if you ignore it.

Now I did notice though when I had this bright spot when blinking a couple days later I got really bad deep eye pain associated with seeing shapes and lines for 2 weeks and the colorful shapes are just now
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Disappearing I also noticed when I had the colorful shapes they sometimes looked red, blue or yellow and flashed but all of this came up to be a type of Migraine Aura

Maybe some of you are just experiencing migraines
Migraines can cause a bright spot when blinking, colorful shapes of colors etc..

It took me 3 weeks for the colorful shapes to completely go away and the bright spot is always there but is much less noticeableto this day so if that's what you have really the best is to ignore that bright spot


But then again if your talking about major vision loss like AnxietyMan16 said then Furthur testing should be considered

I really hope you all get well soon and hopefully what everyone is experiencing is just migraines which is what I have:/
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Stargazer, I believe most ill health comes from stress, grief, anger, etc, even if it's exposure to deadly pathogens-- some people do better than others with illness and there has to be a reason. I personally know a woman whose inoperable brain tumor disappeared after intense prayer with a group of others. Stunning to me as a skeptic of such claims. If I did not personally know this story, I would deny its plausibility.

Melinda, yes. Very dark place. Very dark, angry, grieving place. Add terrified to the mix. And fury at dismissive doctors.

No, this isn't migraines. Or normal. If you others read our histories you would know that we have exhausted neurological and opthamological testing. I've also had enough blood drawn to feel like a vampires victim, tested for enough rare syndromes and pathogens to fill a medical journal.

Stargazer, I read Sarno years ago, and I do believe in the mind body connection. Part of me feels a little Louise Hay about all of this. Like, what is it we all don't want to See in our lives? I hate blame the victim theories ("Your negativity gave you cancer!" "um, no, it was DES exposure *** hole.") but I do believe we can create bad energy that feeds the disease process.

I just have no idea how to begin to heal myself, even if it's only healing my attitude about possibly going ******* blind. Those book titles are worth checking out and I'm heading to Amazon after this post.

Birdlady, I feel for you because you might actually get answers if you could have all the tests I've had. Our country is not civilized to deny health care due to money. Period.

I still believe we should raise awareness. There is some hot shot young Opthalmology researcher dying to make a name for himself/herself and publish a groundbreaking article if we can find him/her. That's my goal at this point. I've worked with numerous research docs as a copywriter and journalist. They're the ones still curious about healing. Just wish I knew the ones in Opthalmology.

This whole last episode for four months has destroyed other parts of my health and made my little girl a nervous wreck and my husband's job on the line from so much missed work to drive me to appointments. My own work ground to a halt and I had to give up a very fulfilling position because I can't see well enough to do the multimedia/photography work required.  I'm also anxious as someone with a mob hit on them. I just never know when to expect the big blinding flash.

Thanks for listening and caring. You are very kind and intelligent people. It's a pleasure to be in this ****** boat with you.
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Just watched the TED talk. This is how I've been trying to eat for years, just not as dedicated as Dr. Wahls. Powerful inspiration to rededicate to this way of eating. Eyes are basically offshoots if the brain. Thanks, Star
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"I just have no idea how to begin to heal myself, even if it's only healing my attitude about possibly going ******* blind." This is exactly where I am right now. I feel that I've rationally dealt with most things that were the trigger of this condition. Including distancing myself from people who were the source of much stress and changing my priorities in life (enormous soul-searching process). However, if the Mind-Body theory is relevant here, and I really believe it is, then the condition has now replaced those frustrations I've already dealt with, and keeps perpetuating itself through causing constant oscillations between anxiety, guilt, and anger. It could just be that I never give my body enough of a break to find its own way to deal with this affliction. Maybe I keep making its job harder by constantly berating it (read: myself) for the condition it's in? Who knows -- it's a frustrating puzzle. It may sound New Age and completely crazy, but after reading about biofeedback I've come up with a hypothetical way to deal with this problem: keep congratulating your eyes on a job well done when there are no flashes (temporary or otherwise), and when they fail and a spot appears, try to be accepting of that failure, *however hard that is*. The thinking here is that your eyes are in the same boat as you, they want to survive and function, as that is their design and purpose. By activating reward pathways in the brain when they are coping well with whatever it is that is attacking them, it might be possible to nudge the body in the right direction and teach it to defend itself.

P.S. Regarding my biofeedback hypothesis: Biofeedback relies on the patient being constantly aware of one of their biological parameters, e.g. blood pressure, and being rewarded with pleasant sounds, vibrations or imagery when they move in the right direction (e.g. have a look at Neurofeedback). But of course, we aren't consciously aware of our blood pressure fluctuations, which is why we would need equipment for biofeedback to be effective. With our eyes, though, it's easy to see whether they are doing well or not, so it might be that no machinery is required. The challenge here would be to cut through the anxiety, anger and frustration, and note something positive about our vision, given the condition it is already in.
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And I'm glad Terry Wahls' TED talk was inspiring. I'm convinced it's another piece of the puzzle of helping ourselves re-establish the self-regulatory, defensive mechanism that keeps our vision intact, one that seems to have gone off the rails for all of us.
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Just watched the TED talk too. Mitochondrial was what I meant to write in my earlier post, not molecular. There are a constellation of inherited disorders, poorly understood, that can cause widespread bodily dysfunction or affect a single organ, such as the eye. I can't recall now who I was speaking to on another site, but a mitochondrial disorder had been suggested to him as a possible cause for his scotomas. It would also explain why our tests are clean. No-one's looking at our DNA.
As far as diet goes, I already eat as close to that as possible (I absolutely draw the line at offal). I also supplement and exercise, don't smoke, rarely drink. BUT when this all started, I was working crazy hours, unhappy in my personal life, eating poorly, boozing way too much, not exercising ... then the stress kicked in, and it became a vicious cycle. Hmmm.
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Yes Iv had this for five years on and off. It maybe nothing but i'm getting it checked out anyway, Think my GP has referred me to a neurologist as he thinks its a migraine variant to get their opinion, although the oppointment is not until May, lol. NHS for you. Iv seen three optometrists and another GP as well. All keep saying what im getting is due to stress or or migraine variant. But eyes fine etc...

By the way this is not in relation to the people who are getting blind spots I dont get these. I believe my symptoms differ. Although when I had my first blinking, flashing light phenomenon, it did reduce to a small blind spot that disappeared in a few days. I'm a scientist currently studying to, although not in the medical ground of science I can still apply well thought research on the subject matter and have some medical knowledge as I was once a trained medic.

Mine does the same thing when going between contrasting colours to, it flares up, catches around monitors or TV, certain lights that are reflected. These all come and start like a camera flash after image after every time I blink or look between contrasting colours, however over the course of time of about three weeks has now disappeared almost being unnoticeable. This only ever happens in my left eye.

I know that its unlikely to be something serious, for me its more about finding out what it is, its mysterious. Although very annoying and dis concerting to.  

Goodluck everyone...

PS: CalliopeWoman have you gone for your Lyme test yet?
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Do you know that the spots are truly gone, and have left no residual scotoma? Have you checked on an Amsler grid?
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The thing about mitochondria is interesting. There is a fairly well-known mitochondrial disorder affecting vision, it's called Leber's Hereditary Optic Neuropathy (LHON). I was tested for the 3 DNA mutations that account for 97% of the cases and they all came back negative. Also, Leber's does show up as optic nerve atrophy on the funds, with a pattern similar to Glaucoma, so it would be something that can be seen. Another important fact: nerve damage can be seen by Spectral Domain OCT way before vision loss due to optic atrophy occurs, whether in Glaucoma / Multiple Sclerosis / Leber's or otherwise. This is done by measuring retinal nerve fibre layer thickness. Mine was perfect.

There is another way to test mitochondrial function: the Lactate/Pyruvate ratio blood test. Normally the ratio is around 10:1, with anything above 25:1 suggesting mitochondrial dysfunction. Mine was on the normal side but close to the borderline, but I believe there are a number of things that can affect the result, including whether you just exerted yourself physically and other things that cause the build-up of lactic acid in the system. Liver disfunction can be one reason for this, and my liver hadn't been all that well in the last few years prior to the onset of symptoms (something I have since childhood, and incidentally, I also have Gilbert's syndrome, like stupideye).

On the other hand, from my limited layman's knowledge, programmed cell death (apoptosis) is often mitochondrial by nature anyway. Suppose the nerve fibres don't get enough nutrients, the mitochondrial energy cycle gets disrupted and the cells are instructed by the mitochondria to die in a controlled manner. I believe this is what happens in conditions like Glaucoma and possibly Multiple Sclerosis (anyone out there, please correct me if I'm wrong). So the mitochondria do not necessarily have to be broken through some inherited mutation, they just have to be starving of nutrients. And of course, the liver is the body's powerhouse that breaks down all the nutrients in food that are needed by the mitochondria.

Which brings me onto the subject of Traditional Chinese Medicine (TCM), which states that the eyes suffer if the liver is unhealthy. How healthy are your livers? What do blood tests say and how does it look on ultrasound? Do you have a history of liver disease, perhaps going back to childhood? For example, those with liver cirrhosis get something called hepatic encephalopathy -- the brain suffers seizures because the liver is damaged and cannot remove ammonia from the blood, resulting in something called hyperammonemia. But that's an extreme case! If the liver is chronically ill, the effect could be more subtle and insidious.

Finally, TCM posits that anger is stored in our livers. Interesting, huh?
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Ok so now it's all coming back to me. About 10 years ago I did explore the liver-eye connection and started seeing a herbalist/acupuncturist in Sydney's Chinatown. At the time, I was getting new spots with terrifying regularity. I was also self-medicating with A LOT of red wine, and do recall a liver panel that showed my enzymes were elevated (or something?).

In a few weeks I'm going to see a doctor who practices functional medicine. I'm going to have her test the hell out of my blood and see what that reveals.

Stargazer, your knowledge is impressive! Thanks for elucidating.
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Waiting for igenex Lyme test results -- the one that tests all reactive bands not just a few like common Lyme test.

My liver enzymes are good on standard testing, but very curious about other possibilities for mitochondrial function. I don't drink or do drugs either but the stress of last few years almost unbearable. Best friend and mother both died of cancer, daughter in terrible school situation, major respiratory illnesses in our family  monthly from daughter's classmates last year, adrenal fatigue and sluggish thyroid. So, yeah, there is a lot to consider.

I have not started back with my neuro acupuncturist again due to cost and scheduling but think it should be a priority.  
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Oh, and I'm frustrated because I've taken CoQ10, pycnogenol (major antioxidant), high levels of B vitamin supplements and Omega 3 fish oil supplements for at least 7 years. Can't believe I'm deficient in these things, plus I'm gluten intolerant do eat no wheat and almost zero grains.  If I'm deficient, I must have serious malabsorption issues.
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Oh, and I take iodine for my thyroid. :-(
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I've supplemented myself with CoQ10 on and off for the last year (three months at a time), same with Fish Oil, Cod Liver Oil, Magnesium, Taurine, etc. etc. But, as Terry Wahls said, that wasn't enough for her either until she started treating food as medicine. Also, who knows, maybe our stress burns out these nutrients way before they get to everywhere they are needed.
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I was trying to figure out if I was tested for the 3 DNA mutations Star mentioned for LHON. What are the test names?  My genetic marker for birdshot chorioretinopathy is pending. (I don't show those signs in imaging but was tested anyway.) , I did not have the marker for ankolyzing spondylitis.  What would the tests be called on the labs for LHON?

I had normal ACE and all markers for inflammation were normal. Also the pathogens I listed -- hence the viral hypothesis from my Azoor expert guy who thinks all these weird scotoma variants are viral.  

Nobody has mentioned Lactate/pyruvate ratio. I have not studied the mitochondrial/neuro aspect of this and concentrated on the retinal/sub retinal. I'm grateful for putting our brains together.

Have you guys had all the inflammation markers, pathogen blood tests? They even tested a rare form of TB, histoplasmosis, toxoplasmosis, syphilis... Jeez.

So interesting about the anger connection. Makes "blind with rage" a particularly painful phrase now.

I am definitely going to put together a short video piece to gain awareness. Let me know if any of you want to share your stories. Look what Under Our Skin did for Lyme. Plus, I need to do something to try to find researcher interested in this. I can't bear the thought of someone else suffering like this with losing vision and not knowing. Melinda, you asked me if it would help to have a diagnosis. Yes. I want to KNOW what is causing this, even if outcome is the same. It's first step toward treatment if not for us, for others. God forbid my daughter ever go through this.
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Re: food as medicine. I have written at length about how isolating components of food can be detrimental because micronutrients that are in the whole foods go missing which act in tandem with the main isolates. I should be eating the whole fish, not just fish oil, but our farmed fish is SO TOXIC I don't do it. Same with non organic vegetables. Don't want 9 cups of pesticides and GMOs to contradict micronutrients and can't always get organic. In a perfect world, PCBs, biphysnol A, pesticides and changed vegetable DNA would not be issue.

WHEN did we all have to become chemists/biologists/medical researchers just to save our health?  
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I feel a little out of my depth when you two get talking, but I'm grateful to be able to listen in. Calliope, when I see the integrative medicine doctor, I'm going to ask for a complete blood workup - including CRP (I know I have inflammation issues going on), thyroid, my hormones (I'm turning 45). What else would you suggest in relation to this eye business?
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CalliopeWoman: the LHON tests would be for the following three mutations:
m.11778G>A m.14484T>C m.3460G>A
(Just typed this out while looking at my test results). And a correction: it's not 97% but 95% of cases, sorry.

Melinda: I am out of my depth myself, really. Prior to this I had zero exposure to the field of medicine, other than visiting the dentist. I have also come around to thinking that integrative / functional medicine is the most promising way out of this predicament, so I wholeheartedly support your intention to investigate this route.
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She says her philosophy is to work in partnership with her patients, first assessing the body and finding its weaknesses and strengths, then "we search for imbalances in mind, body, emotions and spirit, honoring the body's innate ability to heal itself once those imbalances are corrected."
She also doesn't favour prescribing medication. So basically, she sounds like the antithesis of every arrogant, myopic doctor I've seen over the past 15 years. We'll see.
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I should add, I'm not seeing her specifically for my eyes but of course will mention them.
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I see an osteopathic physician in practice with a Naturopathic physician. In California, naturopaths must be licensed and schooled at one of the accredited universities either Bastyr or the one in AZ I believe are only two.  Osteopathic doctors have all prescribing/surgical rights of MDs, with same rigorous med school training and internship just a holistic approach, more nutritional training and a totally different philosophy than MDs.  You can learn more googling their US association. Again, this is different than other countries.  An osteopath in the UK is not the same as a DO here.

Melinda, I'm 48 so the hormone thing is definitely part of my big picture too.

Melinda, definitely get tests for all the pathogens that can cause off eye symptoms. Histoplasmosis, syphilis, the markers for sarcoidosis and ankolyzing spondylitis, the Herpselect hsv panel for herpes, the Quanteferon Gold TB test, and all the markers for inflammation. I would get the iGenex Lyme too just to be sure. Did you ever travel out of Sydney as a kid? Lyme can hang around for decades. The standard Elisa standard Lyme test is useless and causes a lit of false negatives. At least you could rule it out completely. It acts weird like syphilis with eye and brain symptoms.

Do a basic nutritional panel, too. I'm waiting for mine. B12 deficiency in particular can cause weird scotomas.  If you have any malabsorbtion issues, you coukd definitely be b12 deficient.  An unknown wheat intolerance could cause malabsorption, as could leaky gut syndrome.  Both are insidious.   After watching Dr Wahls, I wouldnt be surprised if liw iodine were a problem for eye stuff.  Most doctors won't test iodine but you can send off to Life Extension Foundation for the 24 hour urine test kit and they'll do the test I believe. Your functional med doc probably will, especially if you are in Nor Cal.  Maybe I'm misremembering your location but California has great choice of alternative-minded practitioners.  Eye doctor nights have to call for all the weird uveitis tests like genetic markers for birdshot chorioretinopathy and some others I don't remember. I can't seem to find my paperwork to see what all I had done.  

The problem with specialization is that specialists forget the whole picture, which is why I believe a functional medicine or holistic approach is necessary to all illness. I saw this exemplified with both my parents as they lingered and died. One doctor had no idea how his treatment affected with another dictor's treatment and nobody could see forest for their own trees.  

This is why I'm desperately trying to find out all pathogens/structural issues and now possible mitochondria issues that can manifest in eye disorders that aren't ticked off the standard Opthalmology and Neurology boxes. I want to see an ENT on off chance sinus problem is causing compression in eye area that could irritate either optic nerve or retinal cells. Yes, I'm straw grasping, but I read two small papers of similar scotoma issues resolved by treating sinuses.

Also, there are some weird, probably quack, eye floater specialist's who maintain that most problematic floaters can not be seen in traditional exams because they are not the ones in main part of vitreous but are within 1mm of retina. Since my 2nd retina specialist saw little flecks nobody else has seen (and dismissed them) I'd live a vitreous guy into floaters to get a picture of that region and tell me once and for all: can the vitreous clump and stick to the retina or not?  If these were tiny bits if hardened collagen from the natural aging process of eye --albeit manifesting in unusual way-- it would save a LOT of suffering and wondering if we have cousins of MS, impending blindness, etc.  the vitreous is attached at the macular area where we get these. All of us. And vitreous breaking up is the separation of collagen and hyalauronic acid kinda like eye cellulite for lack of a better metaphor. I've read several online mention "attached floaters" like u mentioned before. I just want to know if that's possible and one of the specialist's in floaters might know. Or have a theory. Or better yet, get a picture of that region close enough to SEE a tiny thing stuck.

My original retina guy may be right that this is caused by a herpes virus like the common HSV (which 80% of people have, and most of carriers are symptomless in the traditional sense and don't know they have it) or varicella zoster or EBV. If that's the case, I'm screwed because Antivirals can slow these viruses but if one of them has found my eye (by nerve pathway in body, NOT by external reinfection) then it will continue episodic reawakenings because we always have the herpes viruses in our body and there is no eradicating them.  Thus, the new spots would keep appearing. I will never KNOW if this is cause unless another absolute diagnosis is made. Which I obviously would prefer, but find it interesting that these spots ACT like heroes outbreaks in the sense that they can come on during stress, sometimes accompanied by run-down feelings but, mostly, episodic in same area of body.  I really hope that's not what this is, but I'm staying in antiviral drug for now. Just like it'll do crazy rounds of doxycycline if my Lyme is positive even if it can't be proven cause of eye spots. Antything to try to preserve vision at this point.

I was surprised all markers for inflammation were normal for me. I really thought those would be off.

Now I've written another novel. Sorry guys.
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You guys can probably tell I tapped out that last typo/autocorrect post in my phone. Sorry.  Was on the run and wanted to reply.
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I appreciate your novels! Thanks so  much - I'm going to write a list of all those tests and take it from there. I've had ANA tests and TB tests in the past, but I guess they bear repeating. I'd be very surprised if something didn't turn up with the inflammation markers for me, and I really want to get a nutritional panel.
Yep, I'm in California, and have recently moved to Marin County, so I now have access to a lot of great medical practitioners. I've been down for three weeks with the flu and am really run down right now Haven't been the the gym since before Christmas, or had much of an appetite so I've lost a fair bit of weight. I want to get back to my regular schedule before I see the new doctor, so the results are a good representation of my usual state of health.

Thanks again, you two!  
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I'll probably not bother with some of the more specific tests - for sarcoidosis and ankolyzing spondylitis, for example - simply because I've had this thing for (I recalculated) close to 15 years now and I'm positive additional symptoms would have manifested in that time.

Calliope, did that new spot that appeared in your good eye while you were typing the other day resolve itself? I hope so.
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One last straw grasp: the TCM tradition of treating energy meridians also really rings true with me. MANY with "untreatable" macular degeneration have dramatically improved with acupuncture and stroke victims in particular have recovered with neuro acupuncture. You can google the lit on neuro or electro acupuncture. It's what my acupuncturist does, and I'm going to figure out how to make time tot treatments to see if it helps. When I was going for those few weeks my myopia improved, just not my spots. But I gave it very little time.
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The new spot resolved. I think. I'm starting to wonder if all these spots aren't just the genesis of what will eventually become permanent. My giant blob is in exact Amsler spot of first spot that "resolved" almost three years ago.
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Btw: feel better! I agree you should wait until you are back on your feet to get testing of general health. Sending big hugs from SoCal.
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Hi Melinda and everyone else,

These do resolve and dont show up on the amster grid. However, i do notice tiny, what id call specs of scotoma residue left, but even that is far and few between. I have a few in my left tiny ones in my left eye but only noticeable if i blink a lot at a very bright white computer screen. Not in natural light. what is intriguing, is that I have had a new spot show up in my right eye only not far below my central vision. This one is tiny and only in my right eye, this is the first time i have ever seen something show up in my right eye for five years of getting it in my left.

However going back to stargazer, this comes on and gets worse untill i eat (when i have gone through the longest time before eating, ie: lunch to dinner) which is strange. It would make sense if this was to do with dietary issues, because of the way some of my spots behave, they can flare up for half a day then very almost disappear again, especially after i have eaten. However the bigger spots I get in the left eye appear in a simular sort of way but disappear after weeks. Im confident that this is not something life threatening and or serious enough to be worried about.... However i am seeing a general nuero in may, and will continue to monitor what i have.

Any other thought I will put on here. However i have to mention i can be a bit health hypo sometimes, typical type 1 personality, i get stressed and have been diagnosed with depersonalisation syndrome in the past (which was very scary i might add, i felt like i was on lsd) I have to commend stargazer for his/her scientific understanding and i thin so far this is the closest possibility of things that might come to be.  
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I'll be interested to see how your ENT visit goes.

I have MAJOR sinus problems. I pretty much constantly have a sinus infection that never goes away no matter what I try. It's been years and it is always there at some degree.  I saw those studies about scotomoas possibly being from sinus problems and that caught my attention. I started doing some sinuses rinses, but it's just made me worse.

On the topic of LHON, your maternal family would likely have a history of people going blind early to mid life. (It's passed down from mothers to all of their children. Men are more likely to be affected, but do not pass it to their children) As far as presentation of LHON goes, we aren't matching it. I personally wouldn't worry about it because we should have gone blind in both eyes by now. Even if you have a mutation it doesn't mean you will get it either. I grabbed this from online. " Specifically, more than 50 percent of males with a mutation and more than 85 percent of females with a mutation never experience vision loss or related medical problems."

My inflammation markers are always low, but I have a positive ANA of unknown significance. This was discovered last year at this time, when I had terribly painful erythema nodosum. Part of me wonders if all of this is somehow related, but I don't know. A week before I got my blind spot, my eye was bright bright red. It was slightly painful and I was unable to wear my contacts. I was going to go into the docs (I was away out of town that weekend), but it got better on Monday.. The doc said it was "unrelated"...I will never really know now.

Good luck CalliopeWoman. I wish I had more to offer you. I was wondering if perhaps we should start our own thread talking about the blind spots since we are getting off topic from where this all started years ago now. BTW I have spots in my right eye now too. Not as large as the one in the left.
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I agree. It'd be great to move this discussion elsewhere. Perhaps a Yahoo group?
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I'm down for a group too, although this is a great place to chronicle what all started as bright spots while blinking that turned permanent. I was thinking of starting a blog with links to articles and all of our stories.

Birdlady, sometimes erythema nodosum accompanies an HSV, Varicella or Eppstein Barr herpes infection.  Since you had a red, painful eye, I would seriously consider blood testing for herpes.  The only definitive hsv test is the Herpeselect blood test.  It can identify both HSV 1 and 2 antibodies. Most people don't even know they have type 1 (i didn't know. Never had a cold sore ever or any other lesion anywhere and my antibodies show ive probably had it hiding in my spine for decades.)  Your presentation COULD indicate the HSV or chicken pox virus traveled up your trigeminal nerve to the top where it can manifest ocularly.  Since you are also having the blue spots and blurring, thus could be standard ocular herpes infection or varicella zoster reactivating in the eyes.  The erythema elsewhere on the body does not happen to everyone and many GPs don't even know it but both an infectious disease specialist and dermatologist told me this weird marriage with the herpes virus and erythema nodosum.  (I've also had the erythema nodosum, after mono which is EBV, and several times with no other symptoms.)

The sinus connection could also be quite plausible if you always have bad sinus problems. I do as well, especially on my bad eye side. But my spots never correlate with sinus flare ups unless I have chronic inflammation I don't know about. Years ago an ENT told me many sinus issues are barely noticible if the affect the sinuses behind the eye.

How do we go about setting up a Yahoo group?
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Incidentally, erethyma nodosum can accompany streptococcal and meningococcal infections, both which could affect eyes -- and sinusus.  But that's where my knowledge ends. I don't believe the bacterial infections would linger or recur like viruses, but I don't know.
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Btw, THANK YOU all for this discussion.
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Regular doc just called. Still waiting for Lyme but big nutritional blood testing all came back normal normal normal. Nothing simple like b12 deficiency to explain this. Still waiting for Lyme test.
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The rheumy tested for lots of things and everything was negative except for my ANA (320 speckled), strep titres, a weak positive for histone abs and above range CH50 >60.  A week later I had it all retested and my histone abs were even higher. Doctor said my body had been exposed to a toxin of some type for it to be showing this. Typically that is only seen high in drug induced lupus. I was negative for lupus, sjogrens, sarcoidosis anda lot of other things he checked for like CMV, EBV (No recent infection), mycoplasma and other things.

When this all happened, I was sick, but I did not even know I had strep. So I never went to the docs. That was at the end of dec 2011.. Two weeks later, I was hit with the erythema nodosum in early Jan 2012 and it lasted a good 2 months with multiple flares and my legs were swollen. It was awful. Then fast forward 8 months and then I got the bright red eye and scotomas. It seems weird to me and maybe not a coincidence? I don't know.

It's seem crazy that you've had EN as well because it's not all that common. There has to be a connection here IMO.

My rheumy said that strep can last in your body for years and years. He said there was a woman who had EN for a year and continued to have high titres. I never got mine rechecked because the EN finally went away. The doctor prescribed me lasix and pred because the swelling was getting so bad, but thank God that week I finally turned around and got better. I didn't end up having to take the meds.

If you find a place where we can talk more about this or in the very least just keep in touch with each other, let me know!!

The blue dots/spots in my vision are crazy. I used to get them like once a week if not less, but now it's all the time.
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My EM was very mild. So mild it wasn't diagnosed at first. Weird how the body deals with infections in adjunct ways sometimes. I wish you could see a DO or functional medicine doc like Melinda and I are able to do. I do feel like my regular doctor has been good at checking for things the neuro and retina folks haven't thought of. I still have no answers, though.

I'm really curious, particularly for Melinda, Star and the original poster here and all the others like me who have had ALL eye and brain imaging tests come back normal. And now I'm having all these blood tests come back normal. What if this really is a variant of normal vitreous liquification and detachment only instead of doing it all at once or in big clumps it does it in tiny ways for years. So many other natural processes have subsets of patients who experience symptoms that aren't standard. The hypothyroid folks who get HIGH blood pressure instead of low, for example. Or even the range of normal blood viscosity. I keep going back to the docs who HAVE seen tiny flecks in eyes that others missed. That there are so many with exact same symptoms -- albeit a small number of total people in the world, enough to se statistically significant -- makes me wonder if this isn't a rare form of a normal function. Doesn't change the vision loss though, but there are a lot of people with "normal" floaters who are severely impaired, too. I knew a scientist who could no longer work at his microscope due to the swirling sludge in his eyes that were "normal" floaters.

When most people have ANY retinal tugging or irritation, it manifests as light. The flash aspect of this just leads me back to micro tugs on the retina from the aging vitreous. Maybe our clumps are just weirder than the standard. Can you tell I've been lurking on floater message boards? A lot of people talk about very similar symptoms, calling them stationary floaters or attached floaters.

Or, I just don't want to admit I might have a virus affecting that can't be cured.

I wonder how many if us are walking around half blind calling it their "migraine variant" because that's the final box ticked off by a busy doctor with no more diagnostic tests to run.
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In the back of my mind, I also wonder about the possibility of this being related to vitreous syneresis. Particularly since it's been nearly 15 years since my first spot and no new (as in different) symptoms have arisen.

I have a good feeling about this new doctor I'm about to see. She's apparently the real deal - did her training at Dr Andrew Weil's integrative medicine program at the Uni of Arizona, then worked for seven or eight years at the Canyon Ranch Wellness Center in Tuscon. She's also written a book on nutritional testing, does a lot of lecturing and public speaking on functional medicine, and has an interest in environmental medicine as well. The first appointment takes 60-90 minutes! From all reports, she sounds like the type of person who enjoys putting all the pieces of the puzzle together.

.


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Oh okay. My EN was so bad, I could only wear slippers for months. I was in agonizing pain and could not sleep with sheets on my  legs. It was awful awful awful. lol I actually thought about it and realized I'd rather have this blind spot forever than to have another flare of EN. That's how bad it was. lol

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Ive read most of the thread here, and thought Id add my story, which Ill just make very brief because its the same as all of yours.

28y male, started getting darkened areas of vision about, geez I dont know, 6 - 8 years ago. All temporary. First noticeable permanent white/grey spot in a long ovoid shape pointing towards the center of vision 4 years ago in the right eye directly south of center vision a pretty good distance away. But its size made it apparent. Blocks out mouse cursor as someone else mentioned if its passed through it.

Second grey spot equidistant from center as the last, but north west of center instead of south occurred about 1 year later (3 years ago). Third occurred in left eye this time, closer to center but in the north, north east, about 17 months ago.

These are all the large, very opaque ones. However I have numerous smaller ones no where near the size of the first three, and ones that seem to not have fully developed into grey spots. They are only dim, noticeable on a white background as not being as bright as the rest.

Like you all, I am a life long migraine suffer in its myriad of variants (aura, no aura, painful, painless, etc, I have them all), high stress, high anxiety, with no apparent source.

Like you all, Ive had a bunch of tests done and Im sure you can guess the results. Still have some coming up such as MRI with / without orbits.

I have drawn many correlations over the years about what exactly might be responsible for these things, and I know there is one thing that absolutely exacerbates the problem, which are stimulants like caffeine. All three of my major spots occurred while having drunk lots of caffeine. The other spots, though they are all in the same fashion, are not as large.

Its been suggested to me that this is some kind of vascular problem. I would say thats a pretty good guess, and that vasoconstrictors like caffeine can make the problem much, much worse. I now never drink caffeine no matter what, and there has been a decrease in dim spots since Ive stopped.

One thing that Ive found that is not mentioned on this thread but I think might be extremely significant, is possible heart conditions that restrict/limit the flow of blood to the head. Researching last night, I have found some theories and research papers that suggest that people with bicuspid aortic valve (BAV), and other numerous heart conditions that are congenital have a hugely higher rate of migraine headache (MH) than the general populace.

This thread could be of interest to you all: http://www.valvereplacement.org/forums/showthread.php?26466-How-many-BAVs-have-migraine-aura

I do have BAV. It was diagnosed at 18, and I have one ultrasound of the heart to confirm it. Since then I havnt had any, but I am suspecting that an aortic stenosis caused by the defective valve is indirectly causing a myriad of my symptoms, perhaps including MH (interestingly there are many people who after valve replacement claim a massive decrease MH, sometimes having it eliminated all together).

My personal, non-professional theory about me, is this: the BAV has led to stenosis (narrowing, which is inevitable for BAVs, only the rate at which narrows differs from person to person), thus a restricted blood flow. This constant restricted blood flow is causing the feeling of not being able to get enough oxygen, putting the body into a sort of a mild to moderate panicky fight or flight mode, which is causing moderate stress. However since the cause of the stress is permanent (and worsening over time), there is no relief, and in a permanent state of moderate and worsening stress, coupled with already restricted blood flow, just about anything can happen to the body, including bizarre things that seem unrelated, such as grey spots in the visual field, unrelenting high body tension, high anxiety, the inability to relax no matter what, nerves on edge that can cause spasms, etc.

This seems to make sense to me. As my BAV continues to narrow, the stress and anxiety increase proportionally. This makes perfect sense to me about me, and it follows perfectly the symptoms I have been observing for the past decade or so, such as increased fatigue, shortness of breath, anxiety, an incessant body stress response to nothing observable, etc.
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Also meant to add that I am getting another ultrasound of my heart soon. I have a new doctor and need to see him first, tell him about it and then get the tests. A positive about this is that the tests to measure stenosis and all that stuff with the BAV are very accurate. If there is a blood flow restriction (already a given with a BAV), it will show up, and its exact size can be determined.

Do any of you have BAV or any other type of heart condition that limits the flow of blood? Also have you ever felt short of breath while doing nothing, such as sitting, or even lying down, and needed to take a deep breath? I have to all the time. I think I could be onto something for me personally.

More evidence that I believe my problems are limited blood flow related: vasodilators help to alleviate the symptoms I get. Whenever I notice a dark spot forming, I immediately take some valerian root and passion flower in pills. Valerian is a light vasodilator, and also an anti-spasmodic. Also, when I used to drink alcohol (dont anymore), dim spots would very rarely pop up. Seeing that alcohol dilates blood vessels, it ties in with the theory.

Taking a bunch of valerian and passion flower, I do believe that I have avoided several bad dim spots from progressing into serious ones. I always have them with me in case I notice one coming about. I immediately take some if I do.

On the note about shortness of breath and things, all this occurred to me just last night, and it really clicked for me that its all connected in some way, perhaps indirectly. I always thought the *source* of it all was anxiety, such as the shortness of breath, the chest and lower throat discomfort, etc. Needless to say Im getting it checked ASAP.

If narrowing (or not) of the aorta is found, Ill let you guys know about it.

I think these white dots we all are getting are symptomatic of something else, vascular related.

I hope Ive given you all some potential insight, and another avenue to explore.

Im definitely staying up to date with this thread.
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"I think these white dots we all are getting are symptomatic of something else, vascular related."

Actually I just wanted to clarify (I cant find an edit button on the post), that I think a body stress response is the CORE driving factor for all of us here, however that response might be to a more generalized vascular issue.

Incessant stress creates bizarre negative byproducts depending on the specific individual, which could include IMO nerve excitement and spasms (maybe broken/crimped vessels in the retina, manifesting as grey spots). I think we are all experiencing the same negative byproducts, just the source of the stress might be different (or maybe not so much) in us all.

Anyway hope Im helping and not saying dumb stuff :)

I know exactly how all of you feel with these things.
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Very interesting story, and I will be very interested in your latest tests. Have you had a flourescein angiogram of your retinas? I was told this is the definitive test for blood flow problems. Mine was normal.

I HAVE had shortness of breath, but it is always related to allergies. Before I was diagnosed as wheat intolerant/possible celiac (I didn't have the biopsy to "prove it' just got well not eating gluten or most other grains) the doctors tested for heart failure. As far as I know, my heart is healthy but I have not had anything other than standard EKGs (many Of them in fact, since I have such labile blood pressure,) BNP blood tests and chest X rays.

I also get short of breath when I have a severe emotional upset or panic attack, but it is always improved by vigorous exercise, which seems to indicate good heart function.

I have never researched the condition you speak of but Star I believe wrote about possible excessive cerebral pressure if I'm not mistaken which sounds like the opposite of what you are talking about.

I can NOT take vasodilators of any kind w/I triggering classic migraine with aura. :-(

I also have noticed temporary spots appear more frequently with me when I drink alcohol. So that is different from your experience.

Everyone has told me my retina vasculature is textbook perfect and my oxygen levels are always great when my GP puts the little finger thing on me.

We are all desperately trying to connect the dots. I'm glad to hear your story, though it complicates the issue even more! :-)
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Your doc sounds great. That's what I live about my DO and Naturopath practice. Never a visit less than an hour and treat the body as whole not collection of parts. Do let us know how it goes. Maybe she will give us a clue. Your symptoms really sound like mine and our stories are similar. I don't know how you've dealt with this for fifteen years.
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Is BAV related to leaky valve or heart murmur? My mother had one of those and didn't know until shortly before she died of cancer.  No aortic stenosis though.
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I read a little in BAV and I don't think that is what my mother had, but I'm not sure. Interesting since it is congenital and runs in families. Wouldn't this limited blood flow show up in the retinal angiogram though? Certainly if any vessels were broken or crimped or blocked it would. They take the pics as the dye is entering the retinal veins to see how well the blood is flowing and then the dye highlights areas that are irregular. Seems like it would be a good idea for you to have this test to see your eye vasculature and how well it is functioning.

What eye tests have you had?  
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I have not had angiogram; twice Ive been told that angiogram is obsolete with the new micro CT scans done in the offices of the opthamologists Ive visited, and that micro CT would show everything the angiogram did and more.

Not sure how accurate that was, but twice it was told to me by two different people.

The scan came back "perfect".

Ive had visual field test, and some others I cant remember at the moment. All "normal".

Im having visual evoked potential today, actually, and transcranial and carotid doppler.
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I had those tests I mentioned above today, with blood tests before.

It appears there is damage to my right optic nerve based on the visual evoked potential test. It is non-trivially slower than my left, which is normal.

Had a big range of blood work done, my immune system seems to be suppressed. Immunoglobin G is below the minimum range, and the other 2 are very very close to being below the minimum range. Iron is also over the max range, and biliruben. Everything else is within range, and the doctor didnt seem concerned with the rest.

He says I really need an MRI. Insurance company and/or radiology lab is being strange about the whole thing though, which needs to get worked out before the MRI.

The doctor and me talked about migraine prevention, and he gave me a prescription for topamax. Looking at the possible side effects like blindness though, I dont think Ill be taking any. Propranolol was another we discussed, which seems much safer from my research, and nothing about blindness in the side effects. I think Ill call and ask for that one tomorrow instead.
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And I had LDL higher than would be normal for my age group, but not really too concerning.
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I find it interesting that all of your tests were normal (even the VFT) but the visual evoked potential came back abnormal. I hope this isn't something bad! But I am glad that your docs took you seriously and decided to continue pursuing it.

Good luck. Keep us posted. :)
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Hey I am hoping some of you can help me out.

Do any of you know how much an OCT costs on average?
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Wow, definitely keep us posted.

By micro CT, are you referring to the OCT? My second retina specialist said the flouroscein angio could still reveal things OCT couldn't, like actual blood flow time.  I've had 2 OCTs and the FA both normal. I have had MRI w and w/o contrast and they were normal, no lesions, so I guess that's why I didn't get Visual Evoked Potentials test. Wonder if the OCT and MRIs would miss optic nerve damage?

Your suppressed immune system could be indicative of Lyme. My two friends with chronic Lyme had similar bloodwork.  I'm still waiting for my igenex Lyme test results. Aall my bloodwork was normal, but I don't know if I had all the immunity markers checked that you did. I had all inflammation markers tested.

The plot thickens. Thinking of all of you.

Oh, and Birdlady, I have no idea what OCTs cost, but many retina specialists do it in the office for price of a consultation.
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Not sure, calliope. They both called it micro CT, and you put your chin on a little thing and a laser does a sweep downwards of your eye and it produces a 3d image of the retina and the other stuff. Amazing what it produces, really.

On the lyme, the neuro also tested for it. Not sure exactly what test he used, but it came back negative. From my research and this thread, I know lyme can hide from certain tests. Ive read that the only way to be absolutely sure is to have some kind of DNA marker test done that takes a while to do and is very expensive, so youd need to get the insurance company to pay for it which would probably mean the doctor has to know about that test, and say its necessary.

Yesterday I took 10mg of propranolol at 9pm, and the dark spots that come and go all over my vision were only at about 2 - 3% their usual frequency, I would say. A huge decline. Made me pretty tired though, so maybe Ill just break the pill in half and do 5mg now. But it seems that the vasodilation it causes is stopping the transient dark spots. Now Im not sure if the white blind spots and the dark spots are directly related, but it was nice not seeing hardly any dark spots pop up, and I was really observing to see what it would do.
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