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 :
‘SERONEGATTVE’ SJÖGREN'S SYNDROME MANIFESTED AS A SUBSET OF CHRONIC FATIGUE SYNDROME
This was some very interesting information. I go and see my nuero tomorrow. Hopefully, I can get some better answers or a better direction as far as what can be done in regards to this virus.
Good luck with your appointment and I hope that you will keep us posted !
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.
I hope this helps ! Thanks for the nice note !
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:
(if you can't see.. it is because I hid this from the public... you have to become one of my friends first ; ^ ) )
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!
Its a mess I know. I would consider calling both your primary care physician's office and your insurance company to getting it settled.
Good luck !
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 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?