We currently live in a state with virtually NO ONE that knows anything about ADEM (I'm surprised it got diagnosed at all!) and now we're moving to another area with no one specializing in ADEM.
It seems the folks I've contacted are really only interested if it is acute (happening right now) rather than recovery. (And again, if it is happening right now, how would I be able to call or email?!?)
Sorry, just really frustrated. For Social Security (which seems to think I'm JUST FINE and can go to work full-time, no problem!), I have to continue seeing someone, but I've no idea even what to ask anymore. I'm 2 1/2 years out of the initial attack. No further setbacks except for when I push to do too much.
Thoughts? We've moving to the Kansas City area but are willing to drive to Colorado or Cincinnati if anyone has suggestions there.