dry eyes and eye floaters

[ginak]

Plateletgal,

Approximately 3 weeks ago, I began having floaters in my right eye. I went to the opthamologist 2 weeks ago and he told me that my eyes looked fine and there was no sign of optic neuritis. Since I have been dx with EBV, my eyes are dry and the left one, which is the eye that contains the floaters does have some mild pain. Is this a part of the viral process? Since I am having other neurological symptoms, should I get a second opinion about this? I am getting getting concerned about it.

Thanks

[Future1984]

Please people, understand that vitamin B12 can cause the same complaints as MS. Especially with the eyes. Please read the book: could it be B12? An epidemic of misdiagnoses. From sally m. pacholock en jeffrey j. Stuart. I was told I was in the early stage of MS, after a optic neuritis. The MRI scan even showed two white lesions. But I had a second opinion and found out I didnot have any active vitamin B12 in my cells, just inactive b12 in the blood. I have an inability to transport the B12 to my cells. So they put me on B12 injections, with methylcobalamin twice a week for two years. Since then, all my neurologic complaints went away. I feel better then ever. I am 31 years old. Please people, read the book! It could be life saving for you all...It was for me at least. All my lesions on the mri disappeared. And i am using a coenzymatic b complex. Never felt better.

[PlateletGal]

Another link about POTS that I have posted in the fibro/CFS forum Health Pages:


Tilt Testing to Rule out POTS (postural orthostatic tachycardia syndrome) ---
http://www.cfids.org/about-cfids/orthostatic-intolerance.asp?view=print

[PlateletGal]

POTS is common with CFS and can often go along with autoimmune diseases and various viruses. I hope this is your only problem.

Keep us posted if you can..... we understand and we care !

[ginak]

I am so happy that you have found the source of your problems. I am going to research this information and hopefully I will be able to find some answers. Many times once people get well, they never come back and post. Thank you for thinking enough of the others on this site to do so. Take care and I wish you a speedy recovery.

Ginak

[Sorkvild]

YES omg I found out what my condition is.  I don't know if this helps the others here, but I figured I would at least share the info.  It's called postural orthostatic tachycardia syndrome (very good info here http://dinet.org/pots_an_overview.htm)  and it most likely manifested itself after I got mono.  I had enough of being bounced from one doctor to the next and kept searching and searching online until I found this sickness that matched exactly the kind of symptoms I had.  What ***** is not many doctors know about or have even heard about it.  I finally managed to get my doctor to schedule the necessary test to determine if I thought what I had and it was probably the only time I felt so happy I failed.  

I'm sorry if this is not what others are experiencing here but I hope you all get better.  Hopefully I helped a tiny bit in spreading the word about this really weird condition to others who are looking for answers and stop by here.

[susan2188]

I was interested in your comment about being off gluten for several months.  I have the same sx as are listed on this site, for 8 years.   I have since stopped seeing ANY western medicine physician and am now seeing a Naturopath.  
I was beginning to think that gluten is not my problem, since after 7 weeks of no gluten, i am still having sx, but they are a bit improved.  After reading this site, I have decided to stay off gluten for 6 months, at least.  Shoty, where did you read that it takes several months to get gluten out of your system?  I would like to read more about that.
thanks!

[ginak]

It is interesting that you bring up Celiac. My doctor just put me on a gluten free diet last week. I was doing fairly well on it until I was told that I had to have an EGD and in order for the gastro doctor to see if I was actually a Celiac, I have to eat gluten today since the test is on tomorrow. I know have to retrain my mind to eat a little bread today. I have the test tomorrow and will let you know how it goes. I have certainly started to feel better on the diet, but still having some small neuro symptoms.

[shoty]

I gogled to find this post as my sis is experiencing eye floaters.  I think all of you should go to the celiac.com forum page and read for a couple hours.  My feelings are that gluten is the underlying cause of almost all auto-immune disease.  In other words gluten comes first, then the immune system attacks itself.  Gluten tests/ celiac testing isn't real accurate and it takes months to get the gluten out of your system, but voice of experience speaking, after 5 months of gluten free eating, all my weird symtoms are slowly dissappearing.  I didn't have the eye floaters, so am tryng to find why sis is having them, but I suspect it is related to gluten.

[rmv80]

Hi ginak,

I have other symptoms (tinnitus, parestheia, headaches, palinopsia, sensitivity to lights). Floaters are getting worse on a day to day basis. I've been to a few retina specialists and they all say the retina is OK, but the floaters are increasing. Not sure what the cause is, but something is causing my vitreous to contract and creating all these floaters. Very annoying knowing that the only real solution is a floater only vitrectomy. Mine started in the both eyes at the same time and have been progressing together, not in just one eye. As the last retinaologist I just saw said "if it's in both eyes simultaneously, then the source is most likely coming from something other than your eyes"

I checked my Rx, i am on 1.25mg of Vitamin D 2x a week for 4 months.

[ginak]

Hello, I certainly don't mind your questions. I am glad that the muscle twitching has gotten better. Yes, I would mention this to my doctor. You should have your vitamin d and vitamin b levels checked. An LLMD is a lyme literate physician. The Vitamin d has helped some, but I guess I won't be able to really tell until I go off of the vitamin d and see if things go back downhill. Right now, I will continue to take the Vitamin D for the next month.

[ginak]

Hello,

Mine have not gotten worse, but just showed up one day and stayed around. When I go out in the sun, I tend to see them even more. I keep hearing that thyroid disease and vitamin deficiency can or may cause floaters. Is this the only symptom you are having?

[rmv80]

About your floaters... have they gotten worse, stabilized? I know that they probably won't ever go away but have you noticed them getting worse over a period of time or did you just get them one day and they've stayed that way since you experienced them originally? Mine continue to get worse, and it's very concerning for me since no eye dr or retinologist can seem to help.

[Sorkvild]

Two things that have improved for me over the past few days are the muscle twitches and being able to wake up more easily....  Hopefully the Cymbalta is kicking in....  but I am more concerned about my heart rate and vision.  However I know what you mean when you feel the doctors are quick to ascribe something unexplainable as depression or anxiety.  

There is such a condition as physical depression because my mom had it a few years ago.  She had unexplainable and severe pains all over and many physical symptoms but absolutely no feeling of sadness, anxiety, worrying, depression.  I forgot which drug was prescribed to her, but she was on it for I think 6 months and it relieved her of it completely.  I might sound like one of those doctors, but I know that physical depression is something that really exists.

You mentioned vitamin deficiencies, has the vitamin D really not helped you at all?  I am wondering if I should mention that to my physician, or if that would have been found in the many blood tests I had.  Another deficiency I found out that has similar symptoms is Vitamin B.  Also what is an LLMD?  I hope you do not mind my questions!

[ginak]

I am so sorry that you are going through this. Your story sounds identical to mine. I too began experiencing these problems in July of this year. I have had a number of tests that include 2 mris of the brain, spine, spinal tap, nerve conduction study/emg, bone scan,and all other types of bloodwork. Thankfully, all of my tests have been negative for MS, except for a protein marker in my spinal fluid. I have been to 13 doctors since July. I have not gotten any answers. I have seen a rheumatologis, 2 neurologists, infectious disease specialist, wellness physician, ENT, and endocrinologist just to name a few. I have been told that all of my symptoms are related to EBV, which was the only laboratory test other than the Vitamin D to come up. There is a strong correlation between EBV, MS, and low Vitamin D. There is also a strong connection between these and lyme disease as well as Chronic Fatigue Syndrome and Fibromyalgia. Most physicians will not acknowledge either of these, especially EBV. I have had plenty to laugh in my face and deny that there is any connection between any of this and a virus that I had in July. My EBV #s were so high that it indicated mono. I have never had mono or at least been diagnosed with it. Everyday my eyes ache and the tingling drives me crazy. I wake up with numb hands on most days. I shake them and the feeling goes away. I too experience aches and pains and severe chronic fatigue. I have just enough energy to work Monday through Friday and on the weekends, its as if I can't move.The floaters in my eyes seem to get worse in the sunlight. I went to an opthamologist and he told me that there was nothing wrong.  I have insomnia, depression, and tinnitus. I am finally going to see an LLMD in 2 weeks and I hope to be able to get some answers. My endocrinologist is also sending me to get some more tests done. I know exactly how you feel and how frustrated you are. If you are like me, you simply want your life back.

[ginak]

Hello,

I have taken 50000 IUs of Vitamin D every week since 12-09-08. I have one more month to take the Vitamin D.  I just had my levels tested again and I tested at a 49, which is still somewhat low from my understanding. My neuro will test me again in March. I am still having symptoms and I am still searching for answers. I am going to see a LLMD next week.

[Sorkvild]

I am so glad to have found this forum.  ginak, I have been having pretty much the exact same symptoms you describe for months now.  I was told I had mono sometime last July-August, and I have yet to feel like normal again.  My eyes become dry quickly, an increase in floaters, and I lose focus of objects easily.  I have muscle twitches all over, and my entire left side has a reduced sense of touch.  My muscles become sore extremely quickly and feel "heavier" than they used to, and my heart rate skyrockets when I do things like climb stairs or carry slightly heavy things.  SInce I have had mono my heart rate is always near 100.  I also get the ringing in the ears, and the "unrefreshing sleep" PlateletGal mentioned.  I have had so many tests and they have all come back negative.  I had an MRI, a ct scan, a stress test, a nerve conduction test, and several blood tests, and a biopsy.  I have seen 2 opthamologists for the vision problems.  One said my left eye was turning out slightly and said sometimes mono can do that, and the other who I just saw today found absolutely nothing wrong with my eyes.  The heart specialist, neurologist, and my primary physician said I most likely have anxiety/physical depression and I just started 30 mg of Cymbalta yesterday.  I'm pretty sure it will do nothing because I don't think a cause for my symptoms has been found.  

Can mono do all these things to you??  I am pretty frightened seeing MS mentioned here....  

Thanks so much to anyone who can offer any more info.  Btw, I am 22 yrs old, male, never smoked, never drank.

[rmv80]

I finally got a vitamin panel done and I as well have a very low Vitamin D level. Mine was 10.

The Dr put me on a Vitamin D supplement, have you had any luck with your treatment so far?

[rmv80]

I was actually reading up on that (a gluten free diet), thanks for letting me know. I wonder if they'd be interested in having me try it, if the celiac disease results come back negative. I'll pose that to them either way.

[PlateletGal]

I thought I would jump in and mention that many, many CFS patients don't tolerate gluten. This also happens in autism patients, who also have a neuro-immune illness and many autoimmune patients.

My physician had me do the elimination diet (go without gluten for at LEAST 2 weeks) and that was how I found out that some of my symptoms were due to gluten intolerance (but not Celiac disease... my doctor ruled that out).

[jason80]

Re: In the mean time I got a script in the mail from my neoru to get tested for celiac disease. She said it was an autoimmune disease of the intestines that cause malabsorption of certain vitamins/minerals (some symptoms present themselves as neuro related w/the tingling and ringing in ears). In doing some web searching it sounds like this may be a possible good lead.

Rmv80,
If one undergoes malabsorption, does that mean the bloodwork will also show vitamin deficiency? Or is the point that the blood levels are normal, but the vitamins aren't being absorbed?

[ginak]

Hello,

Happy Holidays! You know its interesting that you bring up Celiac disease. My mom asked me about this a while back and even bought me a magazine to read about it. However, none of my physicians even brought this up as a possibility. I will mention it to my rheumy and neuro to see what they state. It sounds like you have some good physicians in your corner.

In terms of the spinal, I wouldn't do it unless you felt like it would give you answers that you don't already have. Mine revealed that I had a high myelin sheath based proteins, which is usually indicative in MS patients but could be a result of the EBV virus. My doctor told me at the time that I had no oligoclonal bands. To be honest, having the spinal put me in more fear of having MS. Not only that, but it was the most painful experience that I have ever had in my life. I had a headache for 5 days afterwards. The neuro never told me about getting a blood patch or anything. I did everything they advised me to do and I still had a killer headache. Not only that, but the radiologist had to stick me 3 times just to be able to draw the flood.

I don't ever want to experience that again. I had to be off of work for 3 days straight. I am not trying to be negative, but I wanted to merely share my experience. I would continue down the road you are on and go from there. Don't get the spinal unless it is absolutely necessary.

[rmv80]

Hey There!

So I got my results back from the rheumotologist and everything is OK, in terms of a connective tissue disease. The (another) CBC was fine, ANA, Thyroid, Lupus all tests negative. He is sending me now for another Lyme test as well as a ANCA test and a chest x-ray to check for sarcoidosis, I beleive.

In the mean time I got a script in the mail from my neoru to get tested for celiac disease. She said it was an autoimmune disease of the intestines that cause malabsorption of certain vitamins/minerals (some symptoms present themselves as neuro related w/the tingling and ringing in ears). In doing some web searching it sounds like this may be a possible good lead. Celiac disease can cause a zinc deficiency which is linked to tinnitus and a breakdown in collagen (which makes up your vitreous). So, I'm holding out hope that this may lead somewhere. Even if the celiac disease comes back negative, it is a good reason for me to push for a standard vitamin and mineral testing, especially for zinc.

I also had the EVP tests and was said I could go for the spinal tap, but the doctor didn't think my current situation warranted it, but he left it in my court. Was the spinal tap rough? The invasiveness of it made me say no for the time being... especially now that it looks like my symptoms may not be neuro related.

Thanks for the information and I hope we can all start to get some answers soon :)

[ginak]

Hello,

My brain/spinal MRI are negative so far as well. I did have a spinal tap that revealed high myelin sheath protein, which is causing the tingling and numbness. I have been told that a post viral infection can cause this. I have had EVP(evoked potentials testing), Bone Scan, EMB/Nerve Conduction tests, which have all been normal. About 5 weeks ago, my vision started doing crazy stuff too. I just woke up one day with floaters and when I went to the opthalmologist, he told me that my eyes were fine and no signs of optic neuritis. At least you have been to a rheumy. My appt is not with one until next month. I hope that I can get the answers that I need. I was told that Vitamin D deficiency could cause the floaters in my right eye, so I pray that this is the case. I am now taking 50,000 IUs of Vitamin D for the next 2 months, so we will see. I am standing in faith believing that this will pass. This has been going on with me since July, but I will continue to stand and fight for as long as it takes. Stick around here on the boards and you will find the support that you need. You are certainaly not alone on the message boards. Just to let you know, my Vit D was a 7 with normal limits being between 32-100. WOW!

[rmv80]

Hi ginak,

Thank you for the information! I am going to definitely push for a full vitamin panel test (particularly D since that hasn't been tested yet). I am very concerned about the recent eye changes, especially since they were so sudden. About 1 1/2 months ago my eyes were fine, now I'm told that the vitreous has liquefied and am at an increased risk for a PVD (that's for another message board though :) ). No trauma or anything like that... I am thinking that it may be a vitamin or mineral deficiency. I am visiting Dr Benjamin Lane on Monday who specializes in these kinds of things (http://www.nutrioptom.com/). I had a phone consultation and they take hair samples and send out for certain tests that blood work can not show (or so I'm told). I'll update after my appt on Monday with any information then my follow up 2 weeks later for the results.

I'll also update with the results I get back this afternoon from the rheumatologist but so far I've had a MRI of brain/C-spine the gamut of normal blood testing and nothing major has shown up yet. Oh, I also had the schemer test at the ophthalmologist and was told my eyes were critically dry. Sorry forgot to mention that in my 1st post - it was what lead me here!