I split this topic to a separate discussion from my Rheumatology rant and I thought some may find this interesting...
I have had MS for 11 years, although I've met doctors who question my diagnosis on a regular basis, I've had positive lesions in cervical and thoracic cord, and a few stable little ones in the brain. Most of them question it because my "brain doesn't look like the brain of someone who has had it for over 10 years" (lol) and because my symptoms are very "rheumatological" (see my other Rheum thread if interested).
I've had positive Oligoclonal bands in CSF (lumbar puncture), and a year and a half ago Dr. Rabiee ordered a new spinal tap because the tests are more advanced than they were 10 plus years ago. The new one showed I have an extremely Elevated Myelin Basic Protein (something they weren't testing for specifically in the old tap), I also had a "critical high white count" and the "presence of Varicella Zoster in the CSF". Most of us have varicella laying dorment at our nerve roots (chicken pox virus) and it can be revived into shingles at some point, but no neurologist of the 3 I've seen this year were able to explain it's positive presence IN the CSF itself.
I went to Dr. Dorfman at Stanford for a consult,he wanted me to be tested for Devic's but asked Dr. RAbiee to do it and I haven't been in to see him because he's too busy (haven't seen him since February and can't get in until January again). Dr. Dorfman was perplexed by the presence of Varicella, everyone has been.
Every once in awhile for kicks I've searched for an explanation on the internet and finally a jackpot! I found a study that said a larger percentage of MS patients have VAricalla Zoster in their CSF than the subjects without MS. Interesting, but not sure what to do with it, it may lead to clues about causes though.
One doc said I should have been placed on anti-virals right away, but nope, couldn't even get back into the doc. Recently though, about 3 months ago, I actually broke out with a mild case of shingles on my left thigh. That thigh happened to have a horrible burning numbing sensation from the pelvic (above hip) area all down the front of the leg for many many months before the shingles popped up. The leg healed quickly but the burning, stinging, numbing has remained.
I'm not sure if the intensity of the leg symptoms was an indicator of the shingles brewing at that nerve root or if the intensity brought it on, who knows. Some times the residual symptoms can be permanent if not treated early. I'll never know if my leg would be okay if I had been put on anti-virals when it was first discovered in csf, but hopefully more studies will be done and we'll know a lot more about this interesting MS/Varicella Zoster connection in the future! Google "varicella zoster in csf of MS patients" and I'm sure you'll find the info I saw.
Amazing how much we have to be our own physicians and along the journey bump into some of these interesting things. It seems a doctor would want to see you soon...too bad it's all about them. Good luck! Patricia