So Confused!!

I am very new to this group. I was hoping I could get some answers or even suggestions on what to do.

Back in 2002 I was complaining to my doctors about confusion,  numbness and tingling in my feet and hands and blurred vision. I did have a MRI which showed some lesions. They wanted to wait 6 months and do the MRI again. However I got pregnant in those six months so I never had the MRI. My son was born in April of 2003. Then on August 13th 2003 I woke with the confusion feeling again, I had no taste and my right side of my face went numb. I had another MRI and there were more lesions. The doctor had me do a evoked potential test, which was normal. He decided not to do the LP because of my symptoms and my lesions. I was started on solu-medrol IV which was 2 times a day for 5 days 3 different times and then was on oral prednisone. I also was started on Beta Seron. After approx 1yr of being the on the beta serson I was not getting any better so I was sent to a MS specialist at USC(University of Southern California). He told me after looking at all my tests that I didnt have MS. He wasnt sure what I had but it was something. I had to have all the tests redone including the LP. The LP came back NEGATIVE!!!!...So based on that I was told I didnt have MS and to stop the beta seron immediately. I was sent to a arthritis doctor and they told me I had fibromyalgia. Well that was in July 2004. I havent had a flare up since until last sunday when my feet felt numb...I couldnt feel my feet hit the floor, my vision has gotten weird again, I am having cognitive problems and my tongue is numb.

My PCP doesnt see the need to involve a neurologist. (I cant see one here in Ohio unless a doctor requests a consult). So now I have to find a doctor who will request a consult for me to be seen...

Then I was doing some research on the Natl MS website and saw something called Clinically Isolated Syndrome....Could this be what I really have? Should I have stayed on the Beta Seron all this time? If that was the case why did the neurologist at USC and my regular neurologist take me off and never speak of CIS? Also is CIS a new syndrome???

Help.....

I am so confused

xx

Marti

Clinically Isolated Syndrome is not new...it really is a description of what you had early on -- an isolated attack of something that SEEMED to go away, and didn't appear to have damaged your nervous system (didn't show up in the LP).

If I were you, I'd go back to your pcp, remind him of the earlier attack, and ask again about a referral to a neuro. If he still refuses, then change physicians until you find one willing to make that referral.  Clearly there is something more going on, that just didn't show up in those early years.

You might also check the web to learn about fibromyalgia, to see if any of your current symptoms are similar.  I do know that there are many symptoms that are alike between MS and fibro, and it COULD just be that your current flare is a flare of fibro..but you might want to research that a bit, and see.