Posted by Lisa on July 19, 2003 at 02:45:31:
In Reply to: ms and moya moya posted by doug wang on July 18, 2003 at 11:00:35:
Doug,
I was misdiagnosed with MS about 2 years before I was correctly diagnosed with Moya Moya. A neurologist diagnosed me with the "beginnings of MS" on the basis of an MRI which showed some small scarring (I think that's correct but it's been awhile) and also based on my symptoms. I was having the tingling/numbness, irregular gait, disturbed speech at times etc. About 2 years after that diagnosis I was feeling very skeptical and also physically worse. I just had a gut feeling that I should look into this further mostly because the original neurologist was a jerk, wouldn't listen to me and I didn't trust him. So, I went to a new neurologist who did an MRA along with another MRI and it was the MRA that showed the MM although the MRI still was not helpful in diagnosing the MM. Then an angio further confirmed this. My personal theories of why it seems many are initially misdiagnosed with MS instead of MM are that 1)many doctors haven't even heard of MM 2)the doctors don't run the correct tests and/or enough tests, 3) the initial symptoms can tend to mimic MS and 4) MS is much more common than MM and an easy guess. My critical side also tends to think that many doctors are way too hurried these days, miss too many things and don't listen well to their clients.
Unfortunately, it seems like a high percentage of people with MM aren't correctly diagnosed until after they have a stroke.
If you are asking how I knew for sure that the MS diagnosis was wrong, well I can't answer that except to say that the new doctors just told me that I was misdiagnosed. I don't know specifically what they based that on. All I know is that after the surgery for MM, my symptoms subsided and that wouldn't have happened if I also had MS.
Hope this helps,
Lisa