>THE TRANSVERSE MYELITIS INTERNET CLUB
>
> Welcome to one of the most exclusive clubs around! All you need to
join is a
>Transverse Myelitis diagnosis and a computer.....
>
> My name is jim f., as many of you know. I am an attorney in NE PA.
Last summer,
>without warning, I became paralyzed from the sternum down in the space of
24 hours.
>The local hospitial figured I had Guillian Barre afer my 3rd trip to the ER
and shipped
>me down to Thomas Jefferson University Hospitial in Phladelphia. They
diagnosed TM
>and gave me steroids, solumedrol via IV followed with a tapering dose of
prednisone.
>That stopped the progression of the paralysis, but did not reslut in a
return of movement or sensation below the chest. For rehab, I went to Good
Shepherd Rehabilitaion hospital in Allentown, which is an absolutey top
notch rehab with the a wonderful caring staff. They taught me how to live
in wheelchair. While there I
>got a bloodclot or DVT behind my right knee and then sent me to an acute
care hospiti While there, I found that I could twitch my right big toe.
Slowy, very slowly, movement returned to my legs. I went form walking with
full leg braces in the parallel bars, to a walker with braces, etc, until I
could walk again by myself, which I was finally able to do in about six months.
>
> Today I can walk, but my legs are still very weak, numb, stiff and sore.
>I've learned to live in constant pain, which thank God is a dull heavey
pain I can
>tolerate. I cant run, play golf, or walk on stairs too good, but I can
drive and walk around well enough to perform my job pretty much like I did
pre TM.
>
> I was off work for a while and spent a lot of time on line.
Discovered there wasnt much on TM, and that there are not many of us who
have it. I got so sick and tired of peolpe asking me, "What is that? God,
I never heard of that..." I am sure some of you felt like me..."Am I the
only one unlucky enough to have gotten this?"
>Well via the internet I discovered others, including Jim Lubin who was knod
enough to set up the mailing list. Several months ago I decided to try to
get us TM people toghter in an informal on line email club to share notes,
suggestions, "war stories",
>treatment info, and maybe even eventually a database and patient list for
some resercher...as you know this is one those "orphan" diseases or
syndromes that doesnt get much reserch attention or dollars because of the
few number of people diagnosed wtih TM.
>
> I am discovering that everyone one of us has a different, but similar
story to tell about this mysterious set of symptoms called transverse
myelitis. It baffles modern neurolgy. Mt doc confessed he didnt know much
about it, how to treat it, or to what degree, if any, i would have any
recovery..
>
> I started this group so we could come out of the dark, get together
and help ourselves...maybe we can help advance medical knowlege of and
interest in TM.
>
> This is your group...post it as often or as little as you like about
whatever you like...
>
> I look forward to hearing what everybody has to say...
>
> Talk to you soon...
>
> jim f
>