For those with the bright spot when blinking symptom
There are several of us on here who have a similar eye complaint: seeing a bright flash, like the afterimage of a flash bulb, when we blink, and sometimes, on upgaze. This is transient symptom for most of us, lasting anywhere from a few days to a few weeks. When the "spot" in our visual field passes over a dark background, the spot appears light. When the spot passes over a light background, it appears dark.
So far, the doctors haven't been able to diagnose us, and perhaps that means it is simply some idiopathic phenomenon. But, in any case, I'm wondering what other similarities we might all have that could bring us closer to a an explanation.
For instance, other factors about me which might be clues are:
I take 100 mg of Zoloft a day
I would describe myself as high-anxiety and stress
I clench my teeth, usually on the same side as the effected eye
I have alot of sinus problems around my eyes
I have double vision due to a weak muscle in one eye
I have many floaters and one very prominent one in the eye without the bright spot
I also meant to post that I have been taking supplements specific to retin/macular health for several months now: bilberry, Lutein, Xeazanthin, extra beta carotene and fish oil for the DHA. I've been thinking about that Dr.Terry Wahls' TED talk on eating for your mitochondria and am going to attempt to do it. I eat a similar diet but not in the amounts she mentioned. I don't want to load up on too many crucifers us veggies because they are goitertrophins and bad for sluggish thyroid even though good in other ways so I'll try to add more onions for the sulfur aspect she mentioned. If that diet could get her out of a wheelchair, maybe it could help weird nerve/mitochondria issues in visual pathway that testing isn't picking up.
Calliope, nope, I've not made the appointment yet. I'll definitely report back when I've seen her.
Re supplements, I've been taking lutein/xeaxanthin for about five years now, as well as a pharmaceutical-grade multi, zinc, fish oil and CoQ10. I also take vitamin E, folic acid, ALA, L-carnosine, L-carnitine and inositol. I likely rattle when I walk.
Goodness, do you think I need all those inflammation markers tested too? I know I have autoimmune issues.
Melinda, your functional medicine doc will likely test those as standard markers of inflammation. A regular Allopathic retina guy tested me. You might even have more of the complement markers tested, especially if you are concerned about autoimmune stuff. I'm still a bit nervous about my high CH50, but it can indicate any kind of inflammatory response along the complement pathway or transient infection. Since my other tests were all normal, I guess that's why 3 doctors didn't mention it. Of course, googling other possibilities brings a world of medical terror. Sigh. Good news is they get worried about low CH50 for possible lupus and impaired immunity. Bad news is that sarcoidosis is indicated in high levels, but the ACE is almost always elevated too with that.
Yet another half-learned bit of medical trivia to add to my list.)
I have terrible allergies, wheat intolerance, eczema and very mild asthma so I'm surprised I didn't light up all the inflammatory markers but I haven't researched all if them to know what reacts to allergens. Clearly I had inflammation from somewhere along the path on the day I was tested. Or, someone mishandled the lab sample. I'll let you guys know what my retina guy says when I see him next. I have a feeling neuro opth is next. I want someone to tell me what they can and can't tell about my optic nerves.
Melinda, have you had a visual evoked potentials test during your saga?
Interestingly my CH50 is high too. All inflammation markers are normal too. My C3 and C4 were normal, just like you.
With the erythema nodosum, high CH50 and POTS, I was almost sure I had sarcoidosis, but my chest xrays are always clean and typically that's where you'd show first. More pieces to the puzzle.
Thanks for all of these updates. They are great!! Let us know what the docs say about the high CH50. Mine didn't seem too concerned, he just said it was obvious was immune system was responding to something.
On my IGG Western Blot (long term infection)
I showed strong reaction on 3 of the Lyme bands, indeterminate reaction (something but under the official cut-off for Lyme) on 2 more. My regular doc recommends seeing a Lyme specific doctor and is conferring with his naturopathic physician colleagues in the practice to recommend one.
Lyme can manifest as retrobulbar neuritis which is NOT easily identified by retina exams. I need that visual evoked potential test. Lyme also masquerades as so many things from neurological to autoimmune and can go undetected for decades. Apparently some other spirichetes and insect-born diseases are similar. my friends with Lyme have filled me in a lot but this is a weird rabbit hole. Clearly, I have some activity from something going on or all those bands wouldn't light up. It wasn't the right bands for the CDC positive, but 3 of 5 and 2 more that were ind.
My head is spinning. I'll keep you all updated when I learn more.
So, to recap: I could either have an azoor-like syndrome that is viral (according to first retina specialist,) or Lyme-related optic symptoms. Or something else.
I'm freaked because I have another spot in my "good eye," and one of the main ones in the other is distinctly bigger.
I am skeptical, too--but two dear friends (neither of whom know each other, each on separate sides of country) were baffled by neuro problems (each different) and finally cured when discovered to have late stage Lyme. One was told possible MS or ALS. If I had no reactive bands, I'd dismiss possibility. Also, I've had suspicious bullseye rashes in past and pulled ticks off myself as a hiker. I'm going to see what the Lyme doc says. If I have problems with optic nerve (won't know that unless I get VEP) it could be caused by pathogen. My one doc thinks MAYBE virus causing RETINA stuff, even though mferg shows no damage like with viral AZOOR, so I'm on Antivirals as a possible vision-saving stretch. Lyme actually does cause a lot of vision problems in late neuro stage, so I'm certainly willing to try antibiotics as a possible cure.
My one Lyme friend who was told she might have MS/ALS has resolved ALL symptoms after chronic Lyme treatment. She also had a lot of dysautania symptoms, chronic fatigue and other issues that she didn't even correlate with possible Lyme exposure. It's worth pursuing, in my opinion, since the only risk is antibiotic use. I was once on tetracycline for a year so I'm not afraid of taking antibiotics as a possible vision saving tactic. We'll see what the Lyme guy has to say.
Also, if I get normal VEP, I'm less inclined to think Lyme OR virus is causing these spots, since that would mean all eye structures are seemingly working fine from optic nerve to photoreceptor cells. Then, I might go back to questioning some weird micro traction on retina or bizarre version of vitreous breakdown/clumping like we've mentioned before.
One more thing on viral theory, if you have HSV-1, it can travel up Trigeminal nerve and affect vision, usually retrobulbar. The episodic nature of these spots from people whove been thoroughly tested (like Melinda abd ithers on another board) is consistent with herpes flares. I almost wish this turned out to be Lyme because that can be eradicated by antibiotics. Herpes viruses can, at best, be somewhat controlled by Antivirals.
Oops, one more thing. I just talked to my other Lyme friend who was first clued in to something weird going in when suddenly, after decades, she started having almost chronic cold sores like when she was a child. then, she began having recurrant shingles. Later, it was erythema nodusum. Lyme was taxing her immunity and she didnt know it. Those issues also resolved when she completed chronic Lyme treatment. So, even if my eye spots ARE viral, Lyme COULD be in play.
PIC usually shows yellow lesions on exam, and turns up as hyper fluorescence in the flourescein angiogram hyper fluorescent in certain regions if I'm not mistaken. I think OCT shows signs, too. I had no signs of it.
Have you had MRI yet? Your VEP might be indicative of iptic nerve lesions which could be seen in MRI w/contrast. I don't think a standard MRI will reveal them though. I had to fight insurance to get both because my idiot neurologist put "possible migraine variant" on paperwork and the wouldn't ok it so I agreed to pay out of pocket. Eventually the insurance agreed after reviewing retina specialist notes.
I go back to retina specialist today for follow up. I'm certain he has no other advice except to stay on Antivirals (which lower EBV titers, btw, if you DO have PIC and Epstein Barr is cause) but I'm gonna insist on visual evoked potentials.
Also, waiting for Lyme doc reference. my Western Blot paperwork is fairly damning on that front and I'm going to be tested for other tick-borne disease. I have had tons of exposure to ticks here in Southern California mountains. Incidentally? Most tick bites come from nymph ticks that are smaller than poppy seeds, look like tiny mites and often never seen. I've had them crawling on me after hiking through brush. You'd never notice them.
Alex, your VEP really suggests optic nerve rather than retina. How is the follow up?
I havnt had the MRI yet, I need to find out what my insurance does with out patient radiology. The first radiology place I went to wanted the entire 1500 dollar deductible right there, so that obviously didnt happen.
Wow so today as soon as I woke up, I experienced my first severe migraine aura in over 7 years!
I was trying to type a message to a friend and I could not read past the word I was focusing on. I thought at first that I had a new blind spot and was trying to test it out on the amsler grid. After a few minutes, I noticed it was moving, so that got me thinking it was a migraine aura. I could not text on the phone, nor could I dial phone numbers. Everything in the right side of my right eye was gone. About 35 mins later it return instantly. But wow it got worse before it got better. I could not see anything at all with my right eye. My left eye seemed unaffected.
I'm putting this here because I can say with certainty that what I experience is normally NOT A migraine aura. I know some docs like to just throw that out there. It is definitely random scotomas that are permanent in the vision at all times of the day.
Well, I'm ready to go on a baseball bat swinging rampage. My original retina specialist today who I haven't seen in 2 and 1/2 months, who had told me he thought this was viral and had me on Valtrex seemed not to recall if these were "floaters or blind spots," then when I asked for VEP agreed but said that this is "probably autoimmune retinopathy" and that I should go on imminosuppressants. I was like, WTF? Why now? Normal scans, OCTs, ERG, mfERG and a rheory that "all these retinopathies are viral" is now changed? suddenly it's autoimmune? With no antibody tests or signs of damage on imaging?
He said "any permanent blind spots like this that recur are probably autoimmune" and I said, "well, there's an Internet full of people who must have it then."
Plus, google autoimmune and it's linked in with cancer induced retinopathy so now I've had the seed planted in my head that I may have an unknown cancer. All in 5 minute consult, shuffling me out the door, without ever examining neuro opth side of it. I feel sick and abused.
He didn't remember that I was on Valtrex.
We haven't even evaluated my optic nerves.
My MRI didn't include orbits to show compression or sinus involvement.
I have 20/15 visual acuity, no peripheral vision loss, no blurriness and no color loss (all signs of autoimmune retinopathy)and suddenly he throws THAT out there. After asking me if they were floaters or blind spots.
If I were this careless as a journalist I would be SUED AND FIRED. Why is it ok for doctors? There are good ones, like my brilliant GP, but so many are honestly inept at best and dangerous to your health at worst.
I'm so done with doctors. I've been definitively told migraine, retinal migraine, possible AZOOR, possible amblyopia, a viral variant and now autoimmune retinopathy (which I guess, according to him, all of you have as well,)
I managed to get the VEP ordered thru Jules Stein so I'm gonna have it done then switch over to all Stein docs. It's a teaching hospital so maybe SOMEONE won't just phone it in.
I also talked to my GP about Lyme. It can definitely manifest as optic neuritis. I now have an excellent Lyme ref who is a functional/integrative medicine doc, too and highly respected. I'll see what she says.
I'm so furious I could bust. It's malpractice, in my opinion, for these doctors to just throw out whatever possibility du jour after 5 minutes not even bothering to read your chart. And it's the common experience, not the norm. I saw it when both my parents died. I'm seeing it now.
I've had severe adrenal fatigue and lowered immunity that I've finally rebuilt. All I need is some careless doc (one of the BEST!!!) forgetting this was supposedly viral and putting me on immunosuppressants. This, after another expert a couple of weeks ago just said "I see no sign of ANY disease" looking at same eyes, same scans, same tests.
Melinda. I know you feel me on this.
I'm so sorry to rant, and I'm sure this is inappropriate use of this forum, but we are all trying to get help and I feel like we're caught in a machine of people who would rather misdiagnose than say "I'm not sure" or better yet "I'll check the literature and see what I find."
I think if I am going to solve this it is going to be through my own checking and doublechecking everything my (new)doctors say. No wonder medical care is one if the leading causes of death in this country.
I'll keep you posted on VEP result and Lyme consult. This is freakin madness.
And this is the perfect illustration of why I avoid doctors. It's rare to encounter one who gives a damn about a patient as a fellow individual. You are not even a problem to be solved. You are something to be ushered out of the door as quickly as possible, preferably with prescription in hand for Big Pharma. Where are the doctors with curiosity and compassion? Or even general human decency. Words fail me, Calliope. I'll join you with the baseball bat.
Thank you so much, Melinda. I'm in shock. I don't know why I should be surprised after all I've seen with ******* doctors but I am.
I know I have high EBV, and varicella and HSV-1. If this WERE viral and some jackass who forgot his own diagnosis put me on immunosuppressants, I could be overrun with infection. Not to mention if I have chronic Lyme. I had a suppressed immunity from 2 years of monthly respiratory infections when my daughter started school that i have finally improved. Immunosuppressants? Is he kidding? That is a last resort after ALL testing has been exhausted. The man did not even look at my mferg or Erg when he said this (an important diagnostic for AIR as they are almost universally itregular) nor did he even remember my case. And he is one of the best in Los Angeles.
When I think of the people who have DIED trusting careless doctors, I'm enraged. How do we get help when we are sick or going blind when the caretakers are as dangerous, if not more, than the illnesses?
I suggest everyone read the 2004 paper Death By Medicine if you think I'm exaggerating. Our medical system is the number one cause of death in this country. More than cancer and heart disease. Some say the number is as much as 20 times that since death by medical error is so often under reported and death by side effects of drugs is considered part of standard of care. That an entire industry accepts this as okay is an abomination.
Now would be the time for some MD moderator to erase this post and say I'm banned. Don't dare diss the fraternity.
I think we should move to Yahoo Groups.
I do want to see if I have optic nerve compression or optic neuritis so I'm hopeful to get answers from the VEP. And I am so grateful to have such a wonderful GP, looking forward to the functional medicine Lyme doc. But looks like I'm the one to decipher everything, so I'd better sharpen my medical research skills even more. I should compile all the answers people have gotten from their dictirs as written on these message boards when trying to figure out these spots. Everything from migraine to attached floaters to viruses to malingering-- a personal favorite.
Alex, be sure the MRI includes orbits. Mine didn't and I didn't know to insist on it.
I'm really sorry for exploding here. I just don't want to go blind because the machine was too intellectually incurious to search for healing modality and don't want to DIE from careless treatment.
I read this from one of the opthalmologists on another forum:
"some (floaters) settle, some don't. The back of the eye is partially liquid like water and partially gel like Jello. Some get "stuck" in the gel and some "float" in the "liquid vitreous" Think of the paperweights at Christmas that have the snoman and all the snowflakes. You turn it upside down then right side up and it snows then settles. Think one or two snowflakes stuck to the side of the globe that don't rise or drop. Not a bad model of the back of the eye."
Does this mean there IS such a thing as attached debris? And if this guy's metaphor really is accurate and these "floaters" don't float, then why do doctors say all floaters move? Stands to reason a stuck one would block out vision, same as the snow globe stuck snowflake wouldn't be able to be seen through.
Sorry, I don't buy this at all. At least, it doesn't correspond to the way I experience floaters vs scotomata. The floaters are clearly physical in origin - shadows cast by a three-dimensional form. My spots, on the other hand, are similar to the after-image of looking at a bright light or a camera flash, ie stemming from oversaturation of the retina. To me, they are two very different phenomena.
A related explanation, vitreous tugging, makes a bit more sense. That at least would cause mechanical firing of the retina cells.
But I'm still inclined to think of this as some kind of cell death/malfunction of the retina or choroid, and nothing to do with the vitreous.
My experience is same as yours. I wonder if it isn't partial micro detachment of bits of vitreous. The tugging causes the flashing, the dangling clump causes the shadowy spot? Or, if a clump sits on the retina it would constantly irritate those cells. Cells are still alive -- hence our okay ERG/mfERG-- just constantly stimulated by something stuck there.
There is that tiny 1mm layer right over retina that usually causes the most noticeable floaters, not the big clouds in the main part of the eye. Doctors can't see those tiny floaters unless they use a microscopic lens. They see the big floaters in the main part. This is why so many people are disappointed with vitrectomies because it can't help that region right next to the retina.
I'm probably grasping at straws but I really think weird syneresis could be at play since for so many NO other visual symptoms develop and these spots are so tiny (relatively) and distinct.
Do you notice that your spots are changed by shielding as much light as possible from your vision and then mapping them? Making your hand into a circle and blocking out as much peripheral light makes mine less grey, as if casting less shadow. Still blank but not grey. Looking thru a pinhole is similar.
Do any of you have horizontal lines of missing vision? Like this ------------- I now have two lines from east to west that are missing in my right eye.
Do either of you have an enlarged blind spot? I'm thinking mine is larger than normal, but then again before all of this I wasn't focusing on it at all. Have any of you ever used this site to map it out? http://opl.apa.org/contributions/iUSB/Individual%20files/blindspot.html
I have come across AMN! I can't remember what makes it distinct from the other white dot syndromes, but it does have similar presentation.
I'm hoping maybe in the next few months, 1) I either get better haha! or 2) I'll try to get some money together or perhaps enough credit will be available on my credit card to get myself to the eye doc. :)
So, after a night of highly disturbed restless sleep, sweating all night with being cold and hot at the same time, migraine-esque visual disturbances without distinct pain, and tremendously high body anxiety, I wake up with a large persistent grey blob in the southwest of my right eye.
Looks like a new permanent blind spot is coming about.
My right eye has been getting gradually worse. More and more slightly darkened areas are appearing, with no obvious actual blind spot, but a small area of distortion and darkened perception.
My left eye seems somewhat stable relative to the right, however it is not free from the dark spots appearing. They are smaller though, and less noticeable.
Going to get the MRI soon. Turns out the first radiology department didnt know what they were talking about and were talking out their *****. Bluecross confirmed that place was NOT part of their network, but the place said they were. Bluecross said any in network place is 0 co-pay with doctor auth. So thats cleared up.
I think all of our manifesting visual issues might be optic neuritis, with differing root causes. With the VEP test showing a slow right eye, the timing of all of these symptoms onsets and their slow but unyielding gradual progression, I think MS might a distinct possibility for me, as I do show other symptoms of it that have never been able to be explained.
I know some of your VEPs have come back negative... maybe they are false negatives? I say that because I have the spots in both eyes in different places like you all, but only one eye came back as positive for optic nerve damage (the clearly worse of the two eyes).
And just to add, as this is certainly related in some way, the new big grey blob cannot completely occlude a mouse cursor. In fact it just dims it mostly, but there is a touch of distortion with the dimming. The other 3 large spots, all after having drunk a LOT of caffeine, are much, much worse.
Caffeine exacerbates the problem to a major degree in me. So not sure if you all drink caffeine, but Id cut out the caffeine completely if I were you. I have, and since doing so my vision has improved somewhat in clarity, and the spots when they do pop up, are like 80% reduced in severity.
Im feeling for all of you, this problem is ******** and unacceptable to be forced upon good people.
/sigh, sorry for another post thats going to contradict my others slightly (since theres no edit function I cant spruce up what Ive already posted).
The "new" grey blob is not new. Well, the blob is, but the core blind spot is not. I am now remembering that I stumbled upon that exact blind spot that was hidden when the mouse cursor just lost itself by accept into it. I didnt even know if was there until like a year ago.
This "new" grey blob is actually a "flare up" of a pre-existing blind spot, where the mouse cursor IS lost behind it, and was lost when I first found it. The actual blind area seems exactly the same in size. The darkened area around it is what popped up this morning.
Ok Im sure there will be more posts coming since I cannot edit, which is ridiculous, but so be it I guess. I doubt the website will care to add the function.
BTW (lol, sorry. I swear Im not planning this), my right eye is not as sensitive to light as the left. I can subtly tell this by observing them both individually. In low light it is quite easy for me to tell. The right is just not as sensitive (anymore?) than the left. Of course the difference isnt going to show up on any test; its too subtle and only Id be able to tell.
Do any of you have this? Or perhaps one eye with stronger color perception?
MS is definitely in the back of my mind.... I have had MRI's of the brain, pituitary and orbits with/without contrast about 3-5 years ago. These were all normal. Back then though I did not have blind spots, so who knows. POTS and MS are so similar symptom wise, so it would be hard to differentiate between them in my case. The biggest difference is the cause of symptoms. With POTS I never learned why I had it.
About the missing lines. Everyone on here talks about having blobs or circular spots of vision missing, so I was wondering if anyone had actual lines of missing vision. I don't mean lines on the amsler grid. Mine just look distorted on there. I'll try to upload a picture of what I mean later today.
Your problems definitely sounds like optic neuritis with the dimming in the eye. I can't say that my eyes are doing. It might have been at first, but I'm not really that sure.
So by lines, this is what I mean. This is most of what I can tell is missing in my right eye. There's a few tiny spots I have not included in this, mostly because I'm too lazy to map it out exactly. haha! I wish I had a real visual field test done.
I have same problems with my eyes as yours. I’ve read all tread.
Im 32 yrs old man from Russia and here I found only 2 persons (except me) who has similar problems.
I’m Sorry for my English.
Ok, I have those damn blind spots as you. It starts like it was flash in my eye. Of course there isn’t any flash. When it happens it can resolve or not. If not – I’ve got a blind spot at the center of primary right spot but smaller. Probably you know it well. That spots starts appear around 2.5 years ago and still continues. I have around 7 permanent blind spots in my both eyes at the moment. And I have got 1-2 temporary spots (like flash light) every week which resolved.
Also I have another spots. They are not blind but I see them when I blink if I look at the white wall for example. It looks like dark zones at some places of my vision of both eyes. It’s never resolved. Sometimes it’s more visible sometime less but never resolved. That’s my problem too like a blind spots but I’m not sure what those problems have same root.
Of course I had several visits to opht-s. 4 or 5 times I make all tests like OCT, angio and standard inspection. Doctors didn’t know what it is. The see some changes at me retina but they don’t know the reason. Autoimmune theory and idiopathic. No cure. No prognosis.
Anyway I’m thinking our blind spots have vascular roots. Please try this: if you suddenly got a new blind spot you need lay down at your back for a several minutes. Try to put your head lower the body if you can. And this easy action really really help to resolve new(!) blind spots! Try it by yourself. It’s help me very fast. I think the reason is the more blood pressure to head (brain) when you lay down. The FAST way of resolve new blind spots because the problem is not viruses or something like Lime… But I still don’t know really reason of this troubles and still searching.
BTW some of my permanent blind spots is happens when I drink much coffee.
And I don’t ever have migraine with aura.
Does anyone have a dental implant(s)? I got one before it all starts.
There are MANY reasons for scotoma from vascular to drusen to strophic cells to optic neuritis to neuro retinopathy brain tumors to white dot syndromes to AZOOR to ischemia. Until you've had ALL testing, can't say what it is. (Or isn't.) and can't say one "cure" works for all spots. What gets me is that SO MANY eye professionals give a few tests and proclaim "idiopathic" or worse, say something like autoimmune and wreck health with immunosuppressive drugs that do no good for spots. This takes a multi pronged approach to diagnose from searching for systemic causes to ruling out MS, vascular and pathologies.
I see Lyme doc next week. I get VEP week after. I'll keep you guys posted.
My best wishes for good health and vision. Hugs to all.
A quick question to those of us who get migraine auras... do the migraine auras fill in the blind spots?
I just thought of this now, and have never observed it specifically myself. Not sure if it would mean anything, other than that the visual cortex is intact and not itself damaged, but just thought Id ask anyway to see if it might be another piece to the problem.
MaxNope your symptoms are exactly the same as mine. Except no one found anything wrong with my retinas (you can look back through the thread to see all the tests I did, pretty much everything apart from angiography). I have found the same thing about tilting the head forward, many of the temporary spots go away when I do that, and quickly too. Rapid physical exertion is the other thing that makes them go away. This has also convinced me that vascular issues are at least part of the problem, if not the main one.
"scotoma from vascular to drusen to strophic cells to optic neuritis to neuro retinopathy brain tumors to white dot syndromes to AZOOR to ischemia"
The fact we have had the scotomas for so long, I very much doubt a brain tumor. Tumors grow, some slow, most of them aggressive, and over a five year period I very much doubt that this is the case. Logically and medically speaking. This is following stargazers, mine, mels and maxnopes symptoms, id say this is almost 0. Especially after the tests that most of you have had. And i doubt we all have brain tumours.
Vascular is something I think is "likley". Again most of us on here, if not all have suffered with migraines at some point, I dont anymore but I used to ten years ago. So there could definitely be a link. There are also some papers speculating that migraines might be autoimmune in nature. These are theory's though.
Cell Atrophy, occurs all over the body and not just in the eyes, notable symptoms are, itching, twitching, and joint pain to begin with including headaches and dizziness.
optic neuritis - clinically follows eye pain in 90% of clinical tests, and is gradual, peaks then goes away in 75 - 80% of cases over six weeks to six months, i also follow a forum with people who have MS and optic neuritis and the symptoms are different from what we describe on here. Its not something id rule out however, but in my case and a few others id say its very unlikely.
Autoimmune - There are over 80 different autoimmune diseases, most of them not fatal or very serious, but are unpredictable and twenty of them are hard to diagnose, these are ones that are continually researched from journals and sciences. MS is a possibility but more than 90% of MS patients in Europe develop other neuro symptoms within two - three years.
White dot, the same explanation as vascular. Restricted blood supply, possible, however I think this would not come and go.
You missed my point. My point is that SOME of us have had ALL known testing: MRI w/ and w/o contrast, erg, mferg, visual field, flourescein angiogram, regular OCT, spectral OCT and micro retinal photography, all fundoscopy. We've seen opths, retinal specialists, neurologists. Others have not and if you/they did -- you/they might be diagnosed with one of things I mentioned. Until you have had EVERY imaging test like Melinda and me, you can't say what WE have because it could very well be that you and others just haven't had right test. You can't guess based on us, you have to have all the tests and each one looks for a different thing. For those of us who have exhausted all known tests, we are looking for the unknown --as yet-- cause.
Now, that said, I mentioned Acute Macular Neuroretinopathy and how it is ONLY seen by newer infrared imaging. I am having this imaging at end of the month as my 2nd retina specialist just got back from conference and learned about it. The scotoma Can follow illness or not ( or maybe be viral like occult herpes) but no known cure or treatment. However, more accurate diagnosis would keep others from being put on potentially deadly immunosuppressant drugs when dictors give up and guess autoimmune, AND give a basis for study of cause and potential treatment/nutritional support if more patients get on the books. right now only 60 patients are in literature but that is just because the infrared imaging is fairly new.
Again, until you've had all imaging (which other than VEP which I get on Tues and now this infrared I have had) you can't exactly call your symptoms a mystery or say we all have same thing. It's like saying all lumps are the same because they all feel lumpy.
Too many opthalmologists (or worse, opticians) say all clear or mystery when slit lamp and regular OCT are fine. It's not true. Also, optic neuritis can present in MANY different ways so a WebMd article (I wrote one for them btw years ago when I was a medical copywriter) is not the last word on something. It's just the standard presentation.
I'll let everyone know what my VEP says and the Lyme consultation. (several of the Acute Macular Neuroretinopathy patients had Lyme. Several others had EBV and HSV. So pathogen could be cause. Pathogen can also cause optic neuritis. Lyme and HSV are often implicated. This is just from cursory study of PubMed.) I also have friend with MS whose only symptom for years was optic neuritis. No eye pain, btw.
One last thing: the Acute Macular Neuroretinopathy spots are petal gaped or ovoid, can shimmer or not, often point toward the fovea and are permanent once fully formed but patients report some that fade within hours. They are centered in macular region, thus observed on Amsler. They, thankfully, spare central vision. This most closely matches my spots. This can ONLY be seen in infrared light, is damage to outer retina, and so far not well known or understood. Sound familiar?
Yes. Acute Macular Neuroretinopathy sounds a perfect fit for my symptoms too. I've always thought of my spots as kind of heart-shaped, if you squished them a bit to make them more angular, but petal also works. And they do tend to point towards the fovea, now that I think about it. Once they fade into permanent scotomas after their initial flashy phase, they take on a more bloblike vagueness, but yes, the petal shape is there. The big question mark in this, though, is the word "acute" - wouldn't that exclude me? I'm kinda chronic ...
Also, spared central vision. YAY!!!!
Also, just got back from an optometrist's appointment. I'd been prescribed my first pair of glasses about four years ago - progressive lenses of all things - but never knew quite why and have never been able to wear them. Anyway, this was a practice I hadn't been to before, so I decided to say nothing about my problem and just have him do a straight exam. Everything was fine, of course - 20/15 acuity, maculas looked "perfect", vasculature all normal, peripheral vision 100% on Humphrey, pressures within normal range. The only thig I raised with him was the high-ish cup-disk ratio of my optic nerves (I've had that mentioned to be me before and was told I was a glaucoma suspect because of the tie-in with migraines with aura). He said they were also fine, just a little asymmetrical, which isn't uncommon. That's the first time I've had my eyes looked at in four years, so I guess it was kind of reassuring nothing alarming has occurred in the interim.
One more thing (god I hate there's no edit option on here). I know I "only" saw a lowly optometrist (but I've also seen the leading retinologist at the Sydney Eye Hospital so whatever), but I do agree with the prevailing opinion that serious medical conditions do get worse over time. New symptoms appear, existing ones worsen. CalliopeWoman, I'm categorically NOT saying what we have is not important. I just mean there is some encouragement to be had in this fact.
I'm so sorry that you can't have immediate access to the medical services you need and deserve. It's a great injustice in this country, but somehow the populace confuses fair and equitable medical care for all with "socialism". I don't and never will understand it. I can't imagine how much more intensified your anxiety must be without the access you need. GRRRR. That's what happens when medicine becomes a for-profit industry. Sorry, end of rant. I just wanted to say I feel for you. Where do you live? A teaching hospital might be a great idea.
I'm more upset about the out of pocket costs of seeing the docs, getting tests, lab work. It's insane!... an MRI is like $5k. The crazy costs of care is why everyone has to have insurance and that's also why insurance rates are soo high. It's a vicious cycle!
Yes, an aspirin in a an allegedly non-profit hospital is just under two bucks a pop. The mark-up is stupendous and unconscionable. All the while, as CalliopeWoman points out, medical care is the leading cause of death in this country. Profit before people. Capitalism doesn't equal freedom, folks.
I went to have my teeth checked the other day, and after x-rays the dentist looks surprised and tells me my teeth are remarkably healthy for a 45-year-old and asks "Did you grow up in this country?" (no). Then the hygienist arrives on the scene, glares at him, stopping all but short of a nudge in the ribs, and says, "Oh no, but you don't see the POTENTIAL stuff going on here. We need to work UNDER her gums, BEFORE she develops periodontal disease. We need to get her back and spend two hours on each side, with numbing." Then they both nod solemnly.
We've gotta move to yahoo groups before we get deleted!
Birdlady, I have no words. It's insane that you can't get help you need. Have you looked into Kaiser or other HMO? Cheapest I can think of and at least you could get some standard tests I think. Also, teaching hospitals often have clinical trials for things. Call around and see if you qualify. I woke up the other night worrying about you.
Melinda, I read one paper that followed acute macular neuroretinapathy patient NINE YEARS. Scotomas became "less dense" whatever that means but still there. Also, how have we not come across this before if someone was studied for nine years? Oh yeah. No drugs for it.
Another study mentioned some people had partial clearing of scotoma. That seems to be my experience. I can see SOME light through mine now. In other words, if I look at street lamp to block light, can't see color but can see tiny amt of light. Same with text. Weird that it happens to childbearing age women mostly too.
All bets are off if my VEP comes back abnormal. My Lyme Western blot is lit up so it looks like I'm dealing with that regardless of whether it has anything to do with my eyes. I HAVE been having recent neuro issues and worsening chronic fatigue which is troubling, but no brain lesions so they so far don't think MS. Incidentally, chronic Lyme can manifest as severe occipital headaches and tmj type neck pain. The plot thickens.
Alex, when is your MRI? Your VEP makes it sound like yours is definitely optic nerve related.
I wish we could all go for tea/coffee and compare notes. I also wish everyone could get help they need and all testing. I'm still reeling nobody in 5 months thought to give me VEP with all the freaking experts I've seen.
Infrared scheduled for 27th. Lyme doc day after tomorrow. VEP Tuesday.
That picture of Acute Macular Neuroretinapathy lesions looks JUST like mine. I do wonder. If we can determine that, then I'll know which layer of retina and work with functional med doc/osteo and naturopath to nutritionally assist that part of my body. If Terry Wahls can get out of her wheelchair w MS, maybe we can improve these spots if we just figure out what the mechanism of damage is. Or, perhaps prevent more.
Those solemn nods are the worst. Every doc swore I was going to have a chromosomally damaged child and preclampsia because I had my first baby at 40. Scared me to death with their blood tests and statistics. I'm all for maternal care but this was medical terrorism when I was having a PERFECT pregnancy. Had perfectly healthy baby even though blood tests "suggested" higher statistical risk for Downs syndrome. My chance was something like 1in 350 and they wanted to do amnio which has a proven miscarriage rate of 1 in 100 so I said F you and refused any more tests. Needless to say, I had great pregnancy, no problems other than preterm labor because my baby was SO big and healthy at 7 months my body got the idea she was ready to be born. (they also had told me my advanced age would cause a tiny, underdeveloped kid. Ha! 8 pounds and 22 inches long born a week early.)
It wasn't helpful, it made me a nervous wreck and I was having my child regardless so all that solemn suggestingbof pissible problems nonsense just made a normal pregnancy scary. Every woman in my family for generations has had kids in their 40s, some at 50-53. Weird how doctors look so hard for problems with pregnancy in the US and we have one of highest infant mortality rates in civilized nations.
Contrast it to our eyes where we have partial blindness and docs hardly look at ALL unless we keep telling them to test. Instead insisting we're fine because standard fungus exam is fine. What a mess that I have to be DR. House when vision loss is so serious. I'm tired of being told to "come back if it gets worse.". Gee. Thanks.
But I digress. And now we're definitely getting booted. LOL
I agree, however if it is something serious (IE: brain tumour ect ect), it gets worse and other symptoms appear. That is not to say what we or you have is not important. But having no other symptoms I conclude what I have would not fit into the serious health problem category within the length of time that has passed and symptom based. Although i'm still seeing a neurologist in May as it is, annoying, concerning.
They shouldn't delete this blog. Freedom of speech and expression on the Internet is something a "democracy" should pride itself on.
Good luck, I think one of us is close to a plausible explication soon.
Even if I could get insurance again, I simply can't afford it. Neither my husband or I can work due to our chronic illnesses so our income is nearly zero. Thank God for our families who are helping us out right now.
I'm trying to figure out my options and have to do a lot of calling around tomorrow.
Going back to the same place seems unwise to me even though they offered to give me an exam for $78. All of my eye problems started about 3 years ago, but back then, it was just the blinking lights and lightning streak in my left eye. None of the doctors at this office had anything to say about it YET they never did a single visual field test, ERG, FA, OCT. Nothing!!! How can you diagnose someone with nothing if you did no testing?
I feel they simply strung me along for an entire year "Come back in 4 weeks, then 6 weeks then 8 weeks". I often wonder if he was just trying to get money from my insurance company for office visits or something. I wish I hadn't been so passive with the whole thing. The lights were annoying at times, but certainly not as concerning as having missing vision and lights...hah!!
We could make a closed facebook group called "People with blinking lights and scotomas of unknown origin" ..hahaha Now I'm just being silly. ;)
Good luck Alex. Be sure to get those earplugs into your ears real good before they start. One time they rushed me in there and I didn't get it in the whole way... That was quite an unpleasant MRI!
I called my doc and left a message on their appointment voicemail. I told them I wanted a different doc. Let's hope they call me back and "allow me" to see someone new. In this practice, once you are assigned to someone you can't change... I'm hoping to see the top retina guy in this office. Wish me luck! lol
Good luck Alex! I had music for my MRI w the headphones, but some idiot put Mozart's Requiem in the mix which was absurd and hilarious. Thinking of you.
Good luck Birdlady, I keep wishing I could just get you the tests you need.
I had Visual Evoked Potentials today at Jules Stein. Definitely had angel on my shoulder because retina doc was there, interested in case and watched the whole test. Definitively ruled out MS which was already unlikely with clean MRI but not definite. Good to know since I recently have some neuro symptoms that may be Lyme related. Lyme doctor rescheduled to next Monday.
Have absolutely ruled out optic nerves as place for spots. This doc was leaning toward ACUTE MACULAR NEURORETINAPATHY!!! Just like I mentioned the other day. Wants my other doc to refer for microperimitry and I can get infrared from my 2nd retina guy. I feel like I have to have ten docs to get everything done. Also said to schedule auto fluorescence. Have any of you had that?
So. If its AMN, they don't understand it and could be viral, Lyme or hormonal but in literature has never caused major vision loss or central loss. Also, this doc concurred with what I wrote months ago after I read about MfERG and it's limitations. These spots are just too small to be picked up by that test. So, we COULD have retinal photoreceptor damage, and still get normal mferg. That's why these other tests need to actually map the lesions.
Oh, I should have also had a 10-2 Visual field like I thought to more closely look at macular region where these are.
I'll keep you guys posted. Sending hugs, love and the revelation, for all of us, of what is going on. I feel if I could at least know, I could work on nutritional support, visualization, acupuncture for that area since western medicine can only go so far.
Oh, and eyes may have nothing to do with my Lyme results. Or everything. They just don't understand AMN and I'm not diagnosed yet, just leaning that way by serious process of elimination with all these tests.
Hugs to all. I'm sure I have a zillion iPhone errors in this but I'm posting anyway. :-)
YAY!! I'm soo happy for you. I'm just glad to hear a doctor took you seriously and is now interested in your case. That is awesome and such a blessing! :)
I know my scotomas are not as close to the center as yours. I'm thankful for that! Mine are probably on the border of being more temporal than paracentral, but I really don't know unless I get them mapped somewhere.
Today I did a B12 injection. I used to take them very often because I have issues there, but since my insurance is gone, I haven't been doing them at all because I can't afford them.../sigh...I will let you know if my vision gets better. It may take a few shots. I was starting to get numbness, tremors and other issues on the left side of my body, so maybe this is it. I don't have pernicious anemia as I had those tests done a few years ago, but for some reason my body does not assimilate B12 properly.
Sooo.... the doctor's office I originally went to will no longer see me (because I'm self pay and poor). I was crying my eyes out on the phone and they did not care at all. I want to say the name of this office, but they might ban me from the forums if I do.
I told the woman, so I'm losing vision more each day and your office does not care? She immediately put me on hold for 10 minutes, so I'd cool down. There was no other reason why she did it. So again, I said, you'd rather me go blind than have a doctor see me in your office?
She did not have to say yes, but yes.
My eyes are definitely getting worse and today I decided I really need to get to a doctor. I have lost peripheral vision in my right eye now and have lots of missing lines of vision as well. My right eye is now worse than my left. Something is very wrong!! I am glad my center vision so far as been spared. This allows me to read and do things like that.
I made a new image of the vision I am missing, which is here. Just copy/past the link into your browser.
This leads up to a good thing though.
I got a number to an eye clinic!! I did not know it existed. So I am being seen on Friday by a retina specialist at a clinic in Pittsburgh. Thank you God. Even though this entire thing has been a disaster, I am glad to finally be seen by a doctor again. In the very least he can look at my retinas again and let me know what is going on.
I will let you all know how this goes...Cross your fingers and/or say a prayer for me. Love you all. I hope you are doing well. Good luck with your appointment with the neurologist, Alex. :)
I got in to see the doctor and I am very happy with her!! She actually did an OCT and it was all clear. That was a sigh of relief to me to be honest. She said that she has seen these types of things before where you have spots but no test really confirms it. She said that for now we are going to wait and see what happens. She believes I either have Central serous retinopathy or Acute Macular Neuroretinopathy. She said there is no real treatment for either of them. She wants me to get my photos from the first doctor who saw the white dot because she said my retinas looked completely clear at the moment. yay! I actually do not think I have AMN, so it's probably the former. I have been stressed to heck this past year, so it makes sense.
Even though I don't really have a definitive idea of what is going on, this doctor was really good. She said she has 1 other patient with AMN, so these rare things are at least on her radar. That made me happy!
I had a humphrey 10-2 which did not show my blind spots, so mine are definitely further out from the center. I'd imagine just on the border of temporal and paracentral.
I will see her again in 2 months or I am to call if something else shows up. At that point if I still have the spots, she said she will run more tests. One of them has to do with infrared scanning. I had no idea which test she was referring to.
Infrared can diagnose acute macular neuroretinopathy which is what I think Melinda and I both have that nobody has figured out. I'm trying to get the infrared exam on the 27th. The description fits, but it's always in the macular region, hence the name.
I thought you could see CSR on the OCT? That goes away eventually, right? But haven't you had these symptoms for years? It's good the doc didn't find something serious but the vision loss is still real. Sigh.
I'm glad you got into see someone, but I wish there were more answers or even better: treatment! AMN is apparently being taught at conferences right now. Guess someone published a big enough paper on it.
Looking at an OCT I have no idea what I was looking at, so I have to take this lady's word for it all that it's normal. haha The blind spot started in October. I have had the blinking lights in my eyes for several years, yes.
I think what complicates things is that my 10-2 was completely normal, so part of me is going to just let this rest for a while. I guess my spots either aren't close enough to the center or are simply too small for these tests. I don't have any clue. All I know is that I can make my mouse cursor disappear in several areas of my vision outside of the natural blind spot.
She seemed very open, honest and willing to listen about everything. She told me that we may have to schedule me at her main office for further testing. She would let me know.
To be fair, she did not give me any firm diagnosis and told me that these are just two things she is offering up right now that can present with these symptoms. I actually did not expect to have any firm diagnosis seeing what all of you have gone through unless there was something really bad seen on my retina. I'm happy that I got some sort of test done and someone else to look at my retina, but of course it doesn't bring back the vision. There are not treatments for any of this, so I knew that wasn't a possibility.
Monday I'm calling that other office and telling them I need all records from all visits there...We will see how that goes. I'm banned from their office so this is going to be interesting...haha
Oh here's something I've been meaning to ask all of you and I keep forgetting!
Whenever you go to the doctor, get dilated and all the lights in your eyes, for the next like 3-4 days are your symptoms exaggerated? The amount of blue dots, sparks, lights, blinking lights and other things in my eye are terrible. This has happened often enough now that I know it will calm down soon enough.
Also one other thing. The lady told me my pupils are naturally dilated more than others. I have never had anyone tell me that. I wonder if that's a POTS symptom due to the autonomic nervous system not working properly.
Bird, my spots are slightly exaggerated after dilation, too. And it seems like I get more of those temporary "blinker" spots that fade quickly.
I looked at your Amsler vision loss pic and if it's in the Amsler, that IS macular as that's what it's mapping. The retina physiologist at Jules Stein said with these small spots, standard tests miss the defects so I'm not surprised by your visual field. He said we must have microperimetry to map them. I have no idea if my retina doc will give me another referral for that but it was suggested by the Stein doc along with autoflourescence. Infrared will definitely catch AMR and I swear that's what I have after reading all about it. I know my second retina guy can do that. He mentioned it to my aunt when he saw her last week -- she's now his patient for other retina issues and he said he had just learned about infrared and AMR at a conference that week. Honestly, i can't figure out why 5 doctors didn't mention it as possibility when it's been on books since the 70s and almost always occurs in women under 50, can't be seen on standard exams, etc. with AMR, spots often become less "dense" which I take to mean less visible, possibly showing something through them like my huge one now. Also, I read one patient case study who had some spots resolve 2 years later. I'll take the hope. Also, this leads me to believe AMR occurs in a way that the body CAN heal- thus the variability of resolution in case studies and the fact that some spots are temporary. If they can heal, that just means finding right nutrition, supplements, anti-inflammatory diet, acupuncture to help retina do it, IMO.
CSR almost always appears on the OCT so I wonder why your doc suggested it? I think that can be diagnosed by flourescein angio. I'm so glad you weren't having a detached retina or something like that. Really relieved you saw someone and stunned that AMR is now on doctor radar.
Thinking about you all. Wondering how Alex is doing and what MRI revealed.
Also w AMR, many present days after viral illness so the herpes theory could still hold, even in absence of overt symptoms. Also, many women were on birth control or presented post party's, in perimenopause or were high estrogen in testing. I'm a high estrogen person -- always noted on hormone panel -- so that was interesting to me. Plus, estrogen can fluctuate so much for all women.
Bird, about pupil dilation. Could be a sign of adrenal fatigue-- not on most standard doctor list but well documented in functional medicine/naturopathy world. There's a great book called Adrenal Fatigue you can look up on Amazon. Might help with POTS, as adrenals are so tightly wound with whole CNS. Regular GPs only know how to test for Addison's disease which is severe adrenal dysfunction. AF is about the adrenals not optimally working and the cascade of problems that can cause.
Doctor says MRI doesnt show much, except for some strange areas near the eyes highlighted with galenium. He does not know what they are. Hes referred me to a neuro-optamologist that he sends people to with strange visual anomalies. He said theres no MS. Also said there were some congenital legions.
That sounds like it showed a lot IMO. My MRIs are always 100% clear, perfect except for my messed up sinuses. I love how doctors find all of these things on tests and then try to say "doesn't show much"...haha Who are they are kidding? Thank goodness there is no MS, but I'm concerned about what was found. Good luck to you with the new doc.
I had gone down the adrenal route for many years with zero help with POTS. It might sound similar to each other but not the same at all... So much I could say on that topic, but I will refrain myself from ranting. ;) I have been told many times that its my adrenals. But I was on HC for many years with no help in my POTS symptoms. :(
The picture I made with the amsler grid, I didn't have it at a normal distance. I sat in my computer chair about arms length while sitting at my computer screen looking at that image. I do think my spots are too small to be picked up on those tests. I couldn't believe how large the dots were during the VFT. The last VFT I had many years ago were like quick stars instead of a solid bright dot. During the test my eyes were making up fake dots all over the screen. It was hilarious to me!
Alex, I'm glad nothing terrifying showed up but I wonder what "strange areas near the eyes" means. Neuro Opth definitely sounds like the way to go since you had the delayed VEP too. There are a lot of things that can affect optic nerves, so that definitely is the way to go. Keep us posted!
Bird, I'm glad your adrenals are good! You have enuf to deal with!
Mine generally fade over time and then go away. But as they fade they become smaller and darker until they go away. Funny though i had a new one on sat night while watching a film and lead on my side. In my right eye about the same size of a standby light on a dvd box or something but was not red, it was bright, like lcd screen. Only appeared when i blinked and then went after as my visual cortex was filling in whatever it was. But it went away after an hour. Really odd... I mean completely went away as well. So vascular or something intermittent.
If this doesn't work, google acute Macular Neuroretinopathy case study Clinical and Experimental Optometry Douglas.
Published in 2002. Why have none of us been tested with infrared for this? I've been all over PubMed and this sounds MOST like many of our symptoms. Exactly mine, right down to petal/teardrop shape of spots pointing toward the fovea. Also, the viral plus vascular theories (maybe both?) are intriguing.
Good news, a very few do have scotoma resolution. I want to focus on choroid and retina circulation with nutrition and supplements. Looking into the naturopath side of things in research now. If this is micro ischemia causing photoreceptors damage, At least I'd know what I was dealing with.
Alex, my spot flashes more sometimes than others. The little ones don't flash but the huge one I got five months ago has lights flashing within it and it definitely flares. It also is in the exact same spot on the Amsler as the smaller one that came and went in a week over two years ago.
I was trying to find that study and I can't copy/paste it, nor can I find it in google. :( I guess the reason why I was thinking I do not have AMN is because it talks about a petal shape legion on the retina, but I'm realizing that those are only seen under infrared. Now I get it!!!!
I saw this online.
"Rarer reported associations are hormonal contraceptive use, significant coffee consumption, use of epinephrine and hypotensive episodes"
WOW!!...I don't take BCP, but I have POTS which is known to cause issues with norepinephrine and epinephrine levels in your body. You also have periods of low blood pressure at times. Your body does not properly respond to standing as it should, so you feel weak, heart rate increases and you feel like you are doing to die. I have been taking pseudoephredrine for my sinuses too, which actually makes me feel a lot better. Since taking it I have not noticed any increased symptoms with my eyes though, but maybe I shouldn't take it now at all.../sigh
I can't open that link or find it in google either. I think you need special access.
Birdlady, I often experience a racing heart and dizziness when I go from a lying position to a standing one. Also, if I crouch down to, say, scrub the floor (pfft, like that ever happens but you know the position I mean), then stand I again will get the racing heart and dizziness and blacking out of vision. My BP is low-normal and I take no meds. No idea what it is and have never thought to mention it to a doctor.
Same here for racing heart from lying/sitting to standing. Hmmm.
I can't figure out why you guys can't access that study. The recent one from Japan showed that systemic corticosteroid therapy improved blood flue in and around AMR lesions and, ta da, a resolution of the scotoma. It's only 1 case study but it's from 2012 and it shows actual resolution from increasing choriocappilaris blood flow. In this case, reducing inflammation increased the circulation. I'm on curcumin now for about the 3rd week as natural anti inflammatory. I also wonder what other natural food/supplements assist in circulation.
I have very labor blood pressure. If I panic or have severe anxiety it spikes to 220/120 then drops immediately to 120/70 and I faint so I know I have circulation issues. Can't treat the spikes because meds for high BP make me pass out.
Some AMR case studies happen post partum. Delivery definitely causes weird vasoconstriction then hypotension after delivery. What I can't reconcile in lit is how many present post viral infection. Unless a) they all took Sudafed or b) the inflammatory response during immune response to virus somehow impeded choroid blood flow.
Another thought: I wonder if allergy nasal sprays like Afrin damage the retinal blood vasculature? It's all so close anatomically and it works by vasoconstriction in the sinuses. I practically live on Afrin here in allergyville Southern California.
Why don't doctors ever think about this stuff?! There is so much intellectual incuriosity in medicine it is stunning. I still can't believe HOW MANY DOCTORS have looked at my case and not one thought of AMR until the Jukes Stein retina physiologist overseeing my VEP who was a phD researcher not an MD. It seems like a classic first choice. Even a cursory look at literature would reveal it. Don't MDs bother to read research? Sorry. Rant about to start. I'll refrain.
One more thing, a review of lit study on AMR from mid 2000s talked about some patients having repeat episodes, contradicting what they thought they knew about it being "self-limiting" to one episode. Also, that some lesions just spontaneously resolved and others stuck around, some could be seen on exam but most were either so faint clinicians didn't notice or only visible on infrared. So, it appears to exactly match my symptoms. And now that I've seen one patient fully resolve a much bigger scotoma than mine (the study showed her Amsler) by reducing inflammation/increasing choroid circulation, I have hope for this.
Hmm very interesting about both you having racing heart when you stand and the blood pressure issues... My heart rate increase is quite severe and doesn't settle back down until I sit or lay down again. Yes Melinda, cleaning the floors, vacuuming, laundry, any chores like that are terrible for me!
The weekend before my blind spot showed up, I had forced myself to stand at a church function for many hours... It makes me wonder what was going on with my blood pressure and catecholamines. I got so sick at one point, I literally laid down on the floor in the middle of church. That is the same weekend my eye was bright red, but I don't know if it's related or coincidental.
I had no idea that AMD was associated with catecholamines. Holy cow that is huge. I can't remember if I took my beta blocker those days or not... Maybe that is why beta blockers helped me all those years ago!
I would like to join this conversation....I can't believe how similar my story is to yours. I am really I found you. I am a medical doctor from Europe, Denmark, not specialised in this area though. However, I would like to share my experiences and thoughts with you.
I am a female in the mid-thirties. Labile blood pressure, have had auras twice (never headaches) and I am also a very anxious person. Lots of floaters since beginng of twenties. My story goes 6 years back when the first flash-like spot appeared suddenly - out of the blue - in the para central area of the left eye. I went to an eye specialist who said my eyes were healthy - nothing abnormal. Did not have any special tests done, though. I lived with the spot which gradually became less flash-like bright and more sort of blank, and started forgetting about it. UNTIL 3 months ago when a new one appeared less than 2 weeks after I had the flu. Again it was a flash-like bright spot (after image) that didn't go away and I could also see it when I closed my eye. Now they both appear greyish/blank on white background and light on black background. I tend to see them when I blink and when looking at contrasts with lines for instance. I have read your theries about acute macular neuroretinopathy and defintely think it suits my symptoms. My thought has always been that it was some kind of a vascular issue - relating to stress or high blood pressure - but these are only feelings because I had both spots in connection with being stressed in fairly new jobs. I have to children of the age of 2 nearly 2 and 3 years old. I am looking forward to hearing if you get nearer a diagnosis any of you. Thank you for sharing you stories. I am relieved to finally getting closer a diagnosis, hopefully, and share my thoughts with people who understand what I am talking about......
Ive been reading this post for the past month and for me too its all very similar down to the anxiety issues.. i had a cold and around 2 wks later i got what i thought was a normal migraine aura (blind spot) but it never went away.. iv had it for a month now..it did get a little lighter just like the after image of staring at something dark and then looking at a lighter wall.. i notice it if im looking at closed blinds also.. or if im in the dark and i turn on the light i notice the spot is almost a pale blue color i dont know if any of you noticed if you have that. Im just wondering if any of you are planning to get the infared testing done, or if any of you have, iv read most of the comments but i cant remember.
I really think AMN is what we have.( I'm sorry for the typos AMR above. You know what I meant.) I'm going to see one of my retina specialists -- the one who just got back from a conference and mentioned infrared to my sister who is his patient for other issues -- and see if he can do it. I'm bringing all the studies I have printed out. If he doesn't have the right machine to do the test, I will have him refer me back to Jules Stein.
It's my theory that both vascular fluctuation and infection can promote choroid blood flow issues leading to this. I wouldn't be at all surprised if this wasn't somehow influenced by hormones since childbearing aged women make up most, not all, of patients in literature.
My appointment is on the 27th. I will let you know what happens. I'm still peeved that so many doctors didn't bother to do literature search for this. It's in the family of AZOOR and not unheard of. I was practically diagnosed with AZOOR by the doctor who studied with Dr. Gass, the weird retinopathy master. I didn't have AZOOR. My doc should have considered AMN since even Gass wrote about it, but instead he dropped the ball and didn't even remember my case at the last visit.
If my other doctor can't help me, I'm sure one of the UCLA teaching hospital doctors will want to publish and I am the ideal patient to follow for a paper on this, if this is, in fact, what I have.
I'm reading up on all the studies of supplements used to heal eye disease. A lot of alt med and functional med docs believe all eye disease progresses due to oxidative stress and inflammation.
The other day I was really, really upset and one of my small spots flared up bright, got bigger and now has stayed bigger. Tell me that is not vascular?!
Perhaps inflammation due to virus predisposes that tissue's vessels to constrict more, thus so many having initial episodes after viral illness?
At any rate, I'll keep you all posted. It is so nice to be able to put our heads together. Hugs to all.
I completely agree with you calliope! I have been reading some journals on AMN. From what I have read AMN is theorised to be reactive to hormone cortisol (one of the stress hormones) in some study cases. I can not give the links as these are not publicly available due to them being recent studies. However it makes an interesting point, cortisol reacts on different levels in accordance of what we eat as well (to do with the metabolic system)
I guess my doctor at the eye clinic is pretty good then! :) I plan on having this infrared test done, but it might not be for a few months.
Whenever you are stressed or upset, more than just cortisol is rising. You get increases of all catecholamines (norepinephrine and epinephrine), so that's still a factor. For me what's even weirder though is that I had been on Hydrocortisone for about 3 years and had come off of it ~1 week before my spot showed up...That seems to go against the cortisol theory at least for me.
Yes mine seems to flare into a blueish color at times. I also have a flash in my right eye that's blue whenever I turn a light on or even open my eyes up after being closed for a while, but it isn't a blind spot. That one has been there for years. I haven't been able to figure out what that is at all and pretty much ignore it now...haha
Well I am still getting flare ups of already dead parts of my vision. I seem to be waking up with these things, especially after RESTFUL nights sleep where I am calm and sleep is easy to come by.
This morning I awoke with a flare up of a small dead area west of center in the left eye.
I had another major episode about 3 weeks ago or so... happened at night as I mentioned in a previous post.
Only thing that is consistent with these two nights is that I ate a potato for dinner.
Potatoes are very high in starch. I think starch is processed into sugar by the body. Sugar is a stimulant, is it not? Stimulants like caffeine are what created most of the major dead areas in my eyes, or precipitated the mechanism that did.
I cant look into more right now. Im just too depressed right now about it all.
You know I used to have 20/10 vision with no occlusions of any kind as a child? Its been slowly deteriorating since. My acuity is still not bad (20/30 - 20/40), but floaters are everywhere, scotomas all over the place, photopsia episodes everyday... and Im only 28, with NO major eye injuries, head injuries, etc.
So I guess my eyes will continue to slowly disintegrate for no discernible reason until I die. I think Im resigned to that now. So instead of "getting old" at 60, I started "getting old" at 25.
Oh, also, around the same time I started getting all this, Ive also experienced large increases in tinnitus that sporadically and random present themselves over night, and NEVER go once presented.
Again, no major ear damage. No ear pain. Simply randomly manifesting tinnitus that comes from silence, and never, ever stops once it starts.
Forgive the complaining, but no one else can actually empathize. No one else but you all could understand.
Anyone do any of you have tinnitus too that seems to have arisen in a relatively similar period to when these dead spots have shown up?
I know caliope suggested it, but now Im looking into setting us up a new forum. We need an actual forum of its own to discuss this thing where we can create more than one thread and organize our information in a more concise manner than one gigantic singular thread where you cant even edit your posts.
Don't worry about "complaining". We need places to vent our frustrations and fears. I know when I first had this happen, I was terrified...I don't know what emotions to feel now. Now I'm mostly just confused on what the future holds. Your vision problems seem to be much different than mine especially with your positive MRI.
I have tinnitus very slightly, but not related to my vision loss. It's mostly related to my sinus problems. I still really wonder if my sinus prblems and vision problems are related...
Be sure to let us know about the forum if you get it set up!
Should we just set up a Yahoo forum? I've never done it but I can try to figure it out. That's open to Europeans, right? I've only seen things blocked for the EU when it comes to video content from TV networks. I think yahoo works everywhere.
Add me to tinnitus group. Which, as I read more about circulation, often is indicative of poor small capillary circulation, same as surmised for AMN.
I am feeling pretty down about all of this, too. So rants are appreciated.
But I'm bound and determined to figure out nutritional healing/prevention plan. I've been studying effects of curcumin on the retina. It's a natural anti inflammatory but more interesting are the findings of its neuroprotevtive qualities in the retina. One study showed it may cure some forms or retinitis pigmentosa, lots of research of its improving diabetic retinopathy and this study that it protects retina cells against vascular AND neuron injury from ischemia-reperfusion injury in various ocular disease:
I started taking curcumin last month for the anti inflammatory stuff, and am fascinated by these findings of how it directly affects/protects the retina.
The cortisol relationship definitely relates to me. I really wonder if I don't have some kind of dysautonomia since I have such crazy labile blood pressure, and weird adrenaline surges. Sometimes it's like I've been shot full of speed for no reason.
I also think the TMJ relationship is interesting. Could it cause inflammation that inhibits cerebral blood flow? I'm sure whatever causes this is a combination of things that set up the perfect storm for retinal malfunction. That is, IF this is what many of us here have.
One thing is sure: if this is the diagnosis, western medicine has little to offer so I want to learn everything I can about anatomy and function of the retina, to see what nutrition, supplements and acupuncture can offer. Even knowing exactly which part of retina is affected would help me look for answers the doctors are too busy/disinterested to find. I have to feel like there is hope, or I'll totally freak out about the future. I've list 6 months of my life being in abject terror of waking up with no central vision. I can't believe I've lived like this.
I have tinnitus too but only in my left ear (along with sensorineural hearing loss). Of course, this raised red flags for the ENT who immediately sent me for an MRI to look for an acoustic neuroma. Oh and I also have pretty bad bruxism - I have literally ground down one of my front bottom teeth. Meant to wear a mouth guard for that, but don't.
A yahoo group would certainly be a step up from this. At least we could organise into threads, edit our comments, and there's a search feature too. BUT don't they require dedicated moderators?
Yes, I can access Yahoo I think. With regards to tinnitus I am also affected - have been since I was a teenager. I have always put it down to too loud music at Night clubs when I was really young in combination with sensitive ears due to several ear infections as a child. The TMJ group I cannot join so far I think......
Yes I have TMJ and I grind the heck out of my teeth at night. It has gotten worse over the years as my level of stress is through the roof. At one point I had to wear a TENS unit on the side of my face because that muscle had tensed up so much. It felt like bone on bone and could barely open my mouth to eat. Thankfully the combination of the TENS unit used for several hours a day for a week and me wearing my nightguard has helped BIG TIME. I don't really have pain anymore. You should see the night guard I wear at night though. It's crazy. I've probably swallowed plastic pieces from it as I slept. lol I'm due for a new one and I have no idea what I'll do. I'll probably just buy a cheap one and mold it to my teeth. The one I have now cost like $600!!!
The one thing I still have to watch for are headphones. If I wear headphones that cover my ears , within a week's time, that muscle will get stiff again. It will pop, snap and hurt really bad. I now just use ear buds and I have been good. It took me a while to figure out it was the headphones causing problems.
Yes I know all about that fear of thinking you will wake up one morning and not be able to read, see faces or drive...It's always on the back of my mind. Since we don't know what has caused this, then how can I stop it from recurring? ....Yikes
I've been looking at message board options. There are a lot of free ones other than Yahoo-- yahoo still might be the way to go but I'm going to see the other options. I don't mind moderating, but want to set up a separate email to do it. It won't be a big deal if we set it to public, which we will so that others can find us. Also, if I can make a poll that lives on the board, maybe we can mine some data and see the similarities we (and lurkers) all have with this family of symptoms. It might point all of us in a nutritional/lifestyle direction for helping prevent more spots. I would also like to be able to link to all the relavent studies for reference.
So, do you guys want me to just go ahead and set something up?
The only thing I don't like about Yahoo is how it's an email list. Even the web based page is not like a normal forum. Whenever a thread is being discussed it's very difficult to scroll through and read comments. If you happen to miss discussions, it's very annoying and almost impossible to scroll one by one through the conversation.
You can't really put stickies either. Everything would have to become a file on the sidebar. The spammers on Yahoo groups are really smart. They can get around the authorization keys. If there is no moderation on it or approval to get in the group, it will become full of ads. This is just what I have seen over the years of being on large yahoo groups.
There's an AZOOR yahoo group you can check out just to get a feel for how it works and looks like.
Sounds really good to me. Don't really know much about these kind of things. So whatever you guys recommend. As long as I can stay in touch with you. I am quite worried about it all at the moment. Good luck tomorrow Calliope - you are having in the infrared done right? I guess you will have the answer straight away?
Birdlady, I agree. I find Yahoo unwieldy and just horrible to navigate. It's so easy to lose track of a thread that it almost defeats the purpose of going there in the first place. I don't frequent many forums, but surely there must be a better option. Even a facebook group would be preferable (can't believe I just typed that). At least everything's there on the page, and more or less sequential. The biggest peeve I have with Yahoo is all the clicking and buggering around you have to do just to read a whole thread from the beginning. Sorry not to be offering a positive solution ...
It's just not conducive to any kind of ongoing conversation, in my experience. Comments wind up being made into the void and read out of context. Also, is there an edit function once you've posted? I don't think so.
I have very little experience w Yahoo groups but I have enough not to like it. Ok. I'll look at the other options. I really, REALLY hate Facebook and would rather keep it web based and Googleable so others can find us. Maybe someone has had luck with a treatment or supplement/alt regimen and I would love to hear about it.
I'll check out the competition for yahoo groups and see what I find.
Yes, I have an appt tomorrow but I don't know if I'll have infrared tomorrow or have to make an appt at another office. This practice has a downtown office where I got my angiogram and I might have to go back there. Or, he might refer me back to Jules Stein. It seems we all should have had autoflourescence and microperimetry. The more I read about small para central scotoma the studies mention those a lot and that's what the Jules Stein retina physiologist told me. It is clear you have to know what to ask for going in, rather than consult with the expert about what to get because most of the experts don't know about these rare retinopathies at all.
I'll get looking on the message boards. At least one option had a mobile app, too. Hugs all around.
Meant to mention, am finding a lot of weird retinopathies as I search chronic Lyme literature. I still have not seen my Lyme doctor because of my own scheduling problems but the confection babesiosis has been implicated in retinal infarcts in at least one peer reviewed study, with the suspicion that vasculitis from a chronic infection caused small retinal capillary weakness. Any chronic infection could produce similar retinal response from the immune system, in theory.
To remind everyone, my standard Elisa lyme test was negative but my family doc gave me the iGenex Western blot and I lit it up. I have not been tested for coinfections yet. Also, I have had multiple exposures to deer ticks in SoCal as a hiker.
Since nobody knows etiology of AMN, Lyme could play a part in the disease process. Viral illness is already implicated. The idea that the retina can become inflamed due to a disease process and make vascular injury more likely makes sense. Also, plain ole vascular injury from poor circulation to vasocompression/vasodilation could be a cause in itself.
More soon when I figure out message boards.
Incidentally, some infectious disease folks are saying babesia might overtake Lyme as an epidemic in the US.
I haven't done any walking recently at all, so if this is Lyme it would have had to been a bite from 3-5 years ago. For me that doesn't seem to make much sense.
It's probably vascular, catecholamine related in my case. It makes the most sense. POTS/dysautonomia is like the perfect storm for something like this to happen. You have inappropriate vasodilation and vasoconstriction in certain places of your body. Many take drugs to constrict their blood vessels or to increase BP. Many take a combination of drugs that do both because they can go too high or too low at times. It's unreal....
Most drugs they use in POTS are trying to bandaid these issues like midodrine, octreotide, florinef, salt loading, saline IV, beta blockers, clonidine, DDAVP, SSRI, SNRI.
I can't believe I'm going to say this, but I actually agree that Facebook would be the easiest. I had just deactivated my account, but I will get back on. We wouldn't have to worry about spammers or setting anything up. One thing I recommend is just make it a closed group, so that your posts aren't broadcasted to all of your friends. I don't really want people reading my posts about my eyes. The AZOOR facebook group is open and it actually encourages less activity because anything you write, your friends will be seen in their newsfeed.
I think the idea behind a group would be to share experiences, tests done and possible diagnoses. In order for other people, in the same situation as us, to be able to find us a closed group would not be a very good idea. So probably FB isn't the way to go. However, it would be a good way to keep track on each other in case this thread or whatever we choose someone disappears.......
Just read about macular holes. In some way my symptoms could fit something similar to this just right outside the macula. This would explain the the sudden onset of an after image turning into a blind spot?: "Because the vitreous is attached to the retina with tiny strands of cells, it can pull on the retina as it shrinks. Sometimes, this shrinkage can tear off a small piece of the retina, causing a hole. If this missing piece of retina is in the macula, it's called a macular hole". Also it would explain the temporary very small yellowish, bright spots in the macula during the day (traction of the retina)?.... I don't know.... Another thought!