Aa
Aa
A
A
A
Close
Avatar universal

not feeling well-things keep pointing to MS

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 have had a brain and cervical spine MRI, both negative done in September of this year.
VNG(-)-September of this year
Full body scan(-) in October of this year
Spinal tap-Negative for any O bands, but high myelin basic protein
Evoked Potentials Test (-) in October of this year

EBV titers very high and Vitamin D very low!

I am very scared and discouraged. I have been to 11 doctors since July of this year. Everytime I start to become optimistic about this not being MS, I seem to get a lab result back indicating the possibility of MS. My neuro(2nd) is a good doctor but does not seem to think that this is MS. Of course, he will not rule it out, but he told me that I did not need to focus on this for right now. I want to go on living my life and right now I feel that I cannot do this with the possibility of this being MS being held over my head. I have been told that there is a possibility of it being fibromyalgia and Chronic Epstein Barr because many with these diseases have low Vitamin D levels as well. Any insight or advice would be great. I was worked up by an endocrinologist a while back and have been told by some peers who have CFIDS/ME that I should probably be worked up by endo.
5 Responses
Sort by: Helpful Oldest Newest
147426 tn?1317265632
Hi, good to be having this conversation here.

Everyone, Regina and I had been discussing her fears by PM.  She has told me she has a great deal of confidence in her neurologist and feels that he is treating her and her problems with extreme interest.  Also he is well-regarded in the field of MS in her area.

Right now her neurologist feels that he has a better and reasonable answer to her problems than MS.  He has done MRIs, a VEP, EMG/NCS, and blood testing which has all been normal except for the Vit D level (in the basement) and EBV titers (in the nosebleed section, lol).  Her spinal tap was clear except for high MBP.

His current working theory is that Regina has a "Post-Viral Syndrome" caused by her EBV infection this summer.  I feel this makes a lot of sense.  It explains almost all of her problems.  Several viruses are notorious for causing post-viral neurologic problems.  EBV is right at the top of the list along with CMV (Cytomegalovirus), Adenovirus and Hepatitis B.  Post-viral syndromes can consist of a mulititude of symptoms, but the most common one is persistent severe fatigue.  Since EBV is a neurotropic virus, meaning it has an affinity for the nerves, it would also explain Regina's paresthesias.  It would also explain the depression/anxiety that she feels.

As far as developing MS immediately after an EBV infection - there is little data to show that this is common.  The typical mild EBV infection that most people have does NOT increase the risk for MS.  The studies that link the severe form of the EBV infection - mononucleosis - to MS have shown that the risk seems to appear some time after the infection.  Most of the studies, including one recent and very large study, show that the increased risk of MS after mononucleosis, seems to appear about 3 years after the initial infection.  though I have read one older studie that claimed the risk is immediate.

He is also being super cautious with evaluating her thyroid status.  She has a family history of thryoid disease, so she is at a higher risk for that.  High or low thyroid would also explain her paresthesias.

She explained to me that the CT of her eye (whcih I also questioned) was to evaluate whether one of her eyes was bulged forward as might be seen in hyperthyroidism (Remember Barbara Bush??).  That is appropriate.

EVB infection very often involves an infection of the brain ( a mild encephalitis or meningitis).  This would easily explain the high Myelin Basic Protein in her CSF on the LP.  Any brain infection will raise this.  MBP is not specific for MS.

The low vitamin D does not point toward MS.  It is increasingly common in the general population as we avoid sun exposure and use sunblock.  Low Vitamin D is noted in a large number of people with any of the autoimmune diseases, not just MS.

I also have NOT heard of Vit D causing a neuropathy.  Not sure where that came from.  Vit D's actions are in maintaining bone density and in modulating the immune system - providing some protection from infection.  It is in it's immune function that it is believed to be ONE of the triggers for autoimmune diseases and MS.

So, after a lot of discussion, it seems that Regina's neurologist has a plan and a working theory of what has happened.  It makes sense to me.

Regina - you seem to be caught and paralyzed by the spectre that you might have MS.  You need to break this fixation so you don't miss out on your life "today."  You have two reasons for the depression/anxiety.  The first is that EBV often causes a post-viral depression.  The second is your fear that you might have MS.  So, you would be a great candidate for treating the depression/anxiety with 6 months to a year of an antidepressant that also works well with anxiety.  That would be my main recommendation.  If, in a year you still have the paresthesias, or if you develop more symptoms earlier I'm sure your neurologist will look further.

We have a lot of people whose lives are stopped by a situation similar to yours.  So this would be a good place to hang out and let us help "keep things real."

I hope this and the words of the wonderful people here can help.

Quix
Helpful - 0
Avatar universal
Hello,

I am not sure why my neuro is so sure that this isn't MS. He is the best neuro in town that deals with thousands of MS patients and even conducts all of the studies on MS in this area. I live close to Atlanta and even went to see one of the neuros at Emory and she told me that MS was not my diagnosis. Therefore, he is the 2nd neuro that I have seen. The only reason that he is ordering a CT scan of the eye is because he, along with my PCP both told me that my right eye was protruding from the left eye.I did go and see and opthalmologist who told me that my eye looked fine and to come back in the next 3-4 years unless I began having other issues. He told me that the floaters could be part of a post viral process.  My neurologist just ran his own thyroid panel the other day so I will call the office for those results on tomorrow. My neurologist also told me that a lack of vitamin d could cause muscle twitching and cramps, which is part of my symptoms. I am also a member of the fibro/CFIDS boards and many people with EBV experience neurological symptoms. This is usually referred to as a post viral state/neuropathy. In my case, I hope that this is all that this is and there is nothing else to worry about. I know that my neurologist is still working me up, which is why he is seeing me every month. Therefore, I know that he is still in the evaluation stage. He won't completely shut the door on this being MS, as I don't believe any good neurologist would. He told me to repeat my MRIs in September of 2009 and until that time, he would continue to work me up.All of my symptoms are sensory related, but I do have an internal tremor. I have even considered fibromyalgia lately. I guess I will just have to wait and see how things pan out.

As you can see from my above post, I have had a fairly thorough workup and it could be that it could just be too early. I hope this is not the case. I am having a lot of difficulty sleeping as well, but my sleep study was negative. I will try to hang in there and be as strong as I possibly can.
Helpful - 0
Avatar universal
Hi, Gina. Your vitamin D is extremely low, that's for sure. I haven't heard of anyone having that low a level of D, and it's important to raise it. You need it for overall health, especially bone health. You are being put on a very high corrective dose, so I hope this will be carefully monitored over the short term. Our member Elaine (Monotreme) is very knowledgeable about vitamin levels and deficiencies, and maybe she will see this and offer comments. Or you could PM her with questions.

I have to say, though, that I've also never heard that low vitamin D causes neurological symptoms such as buzzing and tingling. If anyone here is aware that it does, please correct me..

Low D is often found in MS patients, but there is no proof that low D directly causes MS. Even if that were proved, though, it still would be the D level causing MS and the MS causing buzzing and tingling. I haven't read here about other neuros telling their patients that their symptoms come from vitamin deficiencies of any type except B12, which is often linked to neurological problems, especially in Pernicious Anemia.

I know that Epstein-Barr is associated with Chronic Fatigue Syndrome. It also may be a predisposing factor for MS, considering that a higher than expected percentage of MS patients have previously been significantly ill with an Epstein-Barr virus. Just about everyone carries the EBV, but relatively few become ill, and of those, many fewer are very ill. So just having the virus in your blood does not mean a lot medically. Having a very high level could well mean a chronic mono-like disease, but that wouldn't cause neurological symptoms. If you are having a lot of pain then you should be worked up for fibro.

You are right that a normal EMG/Nerve Conduction study shows that the peripheral nerves tested are okay. So that does leave the CNS to be the cause, if the symptoms are neurological.

Given all these factors, why is your neuro so sure you don't have MS? Is it because your MRIs have been normal? What about the physical exam he performed? Did that turn up anything out of the ordinary?

I'm also wondering why you are getting a CT scan of your eye. If you have been having problems, have you seen an ophthalmologist? You should. I agree with you that if you have had a blood workup for thyroid problems and things came back normal, then you don't have thyroid disease.

The tests you mention that you have had all show normal results. So what do you mean about getting lab results back indicating MS?

It seems to me that your neuro is overlooking a lot, or maybe just not explaining things well to you. If you are not satisfied, then by all means go to other specialists, and maybe a different neuro, bringing all your test results so they wouldn't have to be repeated.

No matter what the diagnosis turns out to be, it can be a long and discouraging road getting there. Please keep letting us know how you are doing, and we'll do our best to help. We are not doctors and can't say anything definitive, but along the way the members here have acquired a lot of collective knowledge and more experience that we wanted.

ess
Helpful - 0
Avatar universal
Thanks Lulu. I will do just that.

Take care,

Regina
Helpful - 0
572651 tn?1530999357
Hi Gina,
I'm not a medical expert so I really can't begin to offer suggestions to you.  I'm sorry that you are facing the challenge of figuring out what is wrong - it requires so much patience to work through just about every immuno/neurological disease possibility.  

It's difficult but not impossible to get on with living even if you are worried about it being MS.  We have lots of information on our health pages, upper right side of the page, that might be of help and comfort to you. Being an informed patient is one of the best ways to curb the anxiety.  I hope you will come through often and ask all the questions you want.

Be well, Lulu
Helpful - 0
Have an Answer?

You are reading content posted in the Multiple Sclerosis Community

Top Neurology Answerers
987762 tn?1671273328
Australia
5265383 tn?1669040108
ON
1756321 tn?1547095325
Queensland, Australia
1780921 tn?1499301793
Queen Creek, AZ
Learn About Top Answerers
Didn't find the answer you were looking for?
Ask a question
Popular Resources
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease