Well, I don't know if this is good or bad, it is sort of OT, but I noticed on the bottom of my neuro med charts they don't check the MS box even though they say "MS". They check the "demyelinating disease NOS (not otherwise specified)" box, which somehow seems better to me than having MS, although I can't explain why I feel that way. More mystery, maybe? It's longer and more exotic-sounding and doesn't conjure up quite the same degree of dread. So I now I tell other docs that is what I have instead of MS. They all laugh.
I haven't found a "demyelinating disease NOS" support group yet, and I've been offered MS meds, so here I am. For those of you out there unsure as to whether or not you actually have MS, I truly feel your anguish. I really don't know either.
I just call mine MS only because it's shorter, not because I'm sure.
PS I'm not criticizing my neuro with this story. It is really a big mystery.