I often feel so alone when I try to discuss what transverse myelitis is and
what it does. For the last 6-8 weeks this list has put me in touch with more
people who understand TM then the last 34 years after I was diagnosed!
Keeping the dialogue going is difficult because many of us have had similiar
experiences - don't know what it is, don't know why you got it, don't know
how to treat it, and can't give us a prognosis.
Doctors say you might have Gullian Barre Syndrome, maybe it is Multiple
Sclerosis, or maybe it is Transverse Myelitis. I have sat with doctors over
the years and been told by them that I couldn't have had Transverse Myelitis
and it must have been Gullian Barre and others who have said just the
opposite. I now just say I have a neurological disorder.
What is also frustrating is the lack of information on TM. Isn't there
anybody doing research!!! If there are any researchers on this list - PLEASE
let us know what is some of the current thinking about this disease.
Thanks for listening!
Al Weger
Sarasota, FL