I too have been diagnosed with EBV and experiencing some strange neurological symptoms such as tingling, numbness, electrical sensations, eye pain, muscle twitching. None of these symptoms seem to be consistent with EBV, but more so with MS. I have had MRI of the brain, cervical spine, bone scan, evoked potentials. All were normal. However, my spinal tap revealed high levels of myelin sheath based protein. There were no oligoclonal bands present, which would have highly indicated MS. Any suggestions or thoughts?
Hi ! I'm sorry to hear about what you are going through. If I were in your shoes.... these are the websites I would checking out. I know the Whittemore Peterson Institute is researching "atypical MS". There are so many people who have MS symptoms, but can't get an MS diagnosis.
http://www.wpinstitute.org/ --- The Whittemore Peterson Institute for Neuro-Immune Diseases
http://www.immed.org/ --- The Institute for Molecular Medicine
Sorry about what you're going through. I have similar symptoms to you and have had similar tests. I have no diagnosis, but a viral-based CFS is possibility. I thought I had MS, but doctors don't think my symptoms are consistent along with negative test results. Neurologists thought that LP wouldn't provide useful additional info (FWIW) so I didn't do that one, however.
I'm curious about the bone scan. Can you comment what the doctor is looking for? Thanks.
One thing that Prof. Garth Nicolson, Ph.D. has said is that there can be a fine line between MSN link symptoms and fibromyalgia. Here's the link. This was in response to a member, "Neverwin" --- if you want to find the actual question.
"I consider that there is a fine line between MS-like symptoms and FMS. Often this is due to chronic intracellular infections like Mycoplasma or viruses. These infections can trigger autoimmune reactions by stimulating the release of cell antigens that stimulate autoimmune immune responses."
I did not want to have the spinal, but I wanted to be tested for everything because in my heart, I knew that something was wrong. However, the reason the bone scan was done was because on my cervical spine MRI, there was a decreased signal at C-5 and C-6. The radiologist recommended the bone scan, which revealed nothing but inflammation. I was told that my high myelin sheath based protein was an indication of the EBV. I don't want to be anxious, but I don't want to sit around and wait for EBV to turn into MS either. I am trying to gain as much knowledge as I possibly can. I have increased Vitamin D levels and got back on BCPs(estrogen) to help sway an MS diagnosis. Despite my problems, I am still thankful for all that I have! I hope everyhone has a wonderful day!
Just got back from the Nuero myself, Have had alot of the same testing as you (to many to list check out some of my past post) the Nueros office today told me they also think I am still on the EBV ride but have not ruled out MS or others all the way, however she did say that EBV will cause major havoc on Nerves. Stay with us I KNOW still fighting this thing Padro
I go and see my neuro next week. I am actually thinking of changing docs as I feel that this neuro is just sitting around and waithing on this to turn into something worse. Because the neuro is not treating me for EBV makes me wonder if he is familiar with how to treat the disease, especially if there has been nerve damage. I am going to see my infectious disease specialist to see if there is something that he can recommend. I will make sure that I stick around Padro. It feels good to know that I am not going through this alone. I will keep you in my thoughts and prayers.
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