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.
Hi ! I believe it is and the only reason why is because I have dry eyes and I'm frequently thirsty. There has been research done on this because many CFS patients have symptoms of Sjogren's Syndrome, but do not test positive for the autoimmune illness.
My mother has Sjogren's and I remember reading that researchers believed the cause of SS was VIRAL (sound familiar ?) :
Here are some links:
Chronic fatigue syndrome and a disorder resembling Sjögren's syndrome: preliminary report :
Went to the neurologist yesterday and found out that my Vitamin D level was a 7. Normal limits are 32-100. He told me that he thought that the vitamin d deficiency could be causing some of the buzzing, tingling, numbness, fatigue, etc. He put me on 50000 IUs of Vitamin D for the next 2 months. I am to have another blood draw in March. I had already started taking Vitamin D over the counter about 3 weeks ago, but I did not understand why he waited for me to come to the appt to tell me about the low Vitamin D levels with my levels being that low. I did not understand this. He brushed off the idea of the possibility of this being MS and told me that he was not concerned about it being MS. He told me that he thought it was still a result of the Epstein Barr and the Vitamin D deficiency. My EMG/Nerve Conduction study came back ok, but that still discouraged me a little because that means that the sensory stuff that is going on must be coming from the brain if the not the peripheral nerves. I know many people may not want to take the Vitamin D, but at this point, I don't think I am left with many options. He still thinks that there is something going on with my right eye and is sending me for a CT scan of the eye. Even though I had a TSH, T-3, T-4 drawn 2 weeks ago from my PCP, he is drawing his own. I told him that my mother had thyroid issues and he mentioned Graves disease. I am still confused and left with little answers. I don't understand why my thyroid results would keep coming back normal if there was something wrong. I am going to the infectious disease doctor tomorrow and will show him my results as well. Please let me know of any thoughts or ideas that you may have on this.
I'm not surprised to hear about your low vitamin D level. Dr. Nancy G. Klimas, a noted immunologist and world leader in ME/CFS/FM and Gulf War Syndrome says this about vitamin D, "low vitamin D is a frequent finding even in my sunshine state – Florida - and vitamin D is important to immune health. But I don't now if it was there to begin with or is a consequence of the illness." (source link below). I have mixed feelings on vitamin D. I disagree with many physicians that a low vitamin D level causes illness. I believe a low vitamin D level is the result of illness in many people. There has been some new research that is very controversial on this by Trevor Marshall. Ph.D.
So what are all of your symptoms ? If I remember right.. you had tingling & numbness. Any pains... if yes, what sort of pains ? Fatigue ? Muscle aches ? Unrefreshing sleep ?
The only recommendation I can give you is to consider seeing a physician who knows about CFS (and EBV). Co-Cure.org has a "Good Doctor's List" and members who have subscribed to Co-Cure have posted their physicians on their website. You may want to consider checking out that link and seeing one of those physicians. Also, here is a link below to the Whittemore Peterson Institute. I have high hopes for this place. I know one of the things they are investigating is what they call "atypical MS". The people who founded this institute have a daughter who was diagnosed with CFS.
My symptoms included numbness and tingling, muscle twitching, dry eyes, ringing in the ears,insomnia, etc. As far as the doctor in my area that is on that list, I can't get in to see him until the first part of the year, so there is nothing I can do but continue to see the neuro and the infectious disease doctor. My neuro told me that he did not think this was MS, so I am trying to stop thinking about it. No one has brought up CFS. I get the results of my sleep study tomorrow, so maybe this will provide some answers that I need. I have had a number of tests and at least now, I am starting to get some abnormal findings, so this is somewhat hopeful.
Do you have widespread pain ? To me... it sounds like it may fall into the fibromyalgia category. All of your symptoms are common in fibromyalgia patients. Of course things can always change... you may have more symptoms and then eventually another diagnosis.
Also... have you been tested yet for lyme disease ?
Are you taking magnesium ? If not... I would highly recommend it for nerve health. I buy my magnesium in the powered form so it absorbs easier.
I would much rather this be fibromyalgia more than anything else. I have been tested for lyme disease twice. I have widespread pain that migrates from place to place. I am taking magnesium, but I will go and get it in a powder form so that it can absorb easier. I have an appt with the infectious disease doctor today and if I dont get anything else from him, I will at least be able to get my sleep study to see what it revealed. I will wait and let him mention fibro just to see what he says.
I have very similar symptoms to ginak, but no one has suggested Fibro (not that I have had much of any suggestion at this time). Anyway, based on the web site diagnosis, it seems like Fiber leads to mainly pain in various locations of the body, but not many of the other strange neurologic symptoms. BTW, what kind of doctor typically dx fibromyalgia, does one need to go to a FM specialist?
Unfortunately if you have fibro or CFS... you have few options. You can go to a regular physician and get prescription drugs including Lyrica, which has many side effects... even increases your risk for suicide. My suggestion is finding the physicians who are interested in these conditions and regularly diagnose and treat fibro & CFS. Many of them know what to look for and what to treat. (we have thyroid problems.. yet the standard thyroid tests usually miss that)
Consider googling, "Co Cure's Good Doctor List" to find one of these physicians in your area.
These are the physicians who I pay attention to. They successfully treated their own health problems and therefore, don't rely on drugs necessarily from the pharmaceutical companies:
I went to the Infectious Disease dr on yesterday and never felt so humiliated. I only went back to him to get a copy of my sleep study, which was "abnormal with the suggestion of depression". I have never heard of a sleep study diagnosing depression. How in the world could the sleep study have been normal when I only slept 1.5 hours. I went to him in hopes that he would shed some light on EBV.....big mistake. He told me that he didn't believe that EBV or CFS would be causing all of the neurological symptoms that I am having. I explained to him that my neuro suggested that the symptoms could easily be caused by this since I had a virus back in July. He laughed at me and told me that he had never heard of anything like this. I told him that I called his office and asked them if he treated EBV before I came in and was told that he had. He told me that there was no such thing. I asked about the Vitamin D level and he told me that it was probably the "beginning of MS". This really bothered me and I left in tears. He took no time to try to help me. I got the names of 2 Rheumy's in my area that were on the list that VaBreeze sent me. I like my neuro, but I really believe that I need to find someone who can really help me understand all of this craziness. This is so frustrating. I don't want MS and in my heart, I don't think this is what this is. I just think that the symptoms lead physicians to automatically assume this without even thinking of anything else. I was hoping that my sleep study had come back abnormal, but again nothing. All I have so far are high EBV titers, normal thyroid studies, and a low Vitamin D. When will this ever end??????????? Just a little frustrated!
What a bleep bleep ! I am so tired of this clueless physicians. (ok... I'll behave now)
Please consider seeing one of those physicians on the Co Cure website. (read my last post to jason) And no, I've never heard of ANY sleep study that can diagnose you with depression. He's not telling you the truth.
I have 2 rheumy's that are on the list who are in my area. The last time that I tried to get an appt with them, I was told that I would have to be referred even though my insurance does not require a referral! I just want someone to help me figure this all out!
I have very similar symptoms... I got had mono about 5 years ago. Recently I got tinnitus and a change in my vitreous (starting to liquefy), causing floaters & some changes in my vision. I also have random tingling and headaches, facial pain. 2 neuro's do not believe it's MS and I am awaiting a host of blood test results from a Rheumatologist today.
This may sound like a real beginner question, but I've had CBC's, B-12, lyme tests but never something I would consider a "Vitamin Panel". What type of blood tests should I request other than what I listed above? Today I will get back my ANA & a host of connective tissue tests (Sjogren's is the main thing he's testing for) but I would think that they'd want to test all vitamin levels, right?
I hope that you will find the solutions to your neurological symptoms very soon. I would certainly make sure that they run a Vitamin D and a B-12 on you. I would also have them to check your thyroid to make sure that there are no issues there. Its been a long ride for me and still no answers. There are others on this board like Plateletgal who has a wealth of knowledge who should be able to assist you. I hope that you get the answers that you need very soon. I am still going from doctor to doctor. Its frustrating, but I can't stop fighting!
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!
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!
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 :)
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.
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.
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?
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).
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.
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.
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.
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.
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!
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.
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?
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.
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.
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 (symptoms) 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.
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.
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.
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.
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.
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