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In that I just found this site, I have no idea about a support group in this
area . ( Albany, NY)  When she was diagnosed many years ago, no one really
knew much about this. she had a wonderful Neuro then (who has since died) who
was so patient in answering my questions ... these days it seems that DRs
have no time to talk to anyone ... she is rushed in and out and they seem to
have given up on her ...