> From: Bryan Kessler <bkessler(AT)hookup.net>
> To: tmic-list(AT)eskimo.com
> Subject: Rare disease discussion groups
> Date: November 18, 1995 6:45 PM
>
> This is in resonse to Al's message commenting on his observations
> about the content of the positings in this group over the last few weeks.
>
> After visiting my infectious diseases specialist this morning I can
> tell you EXACTLY why I joined this "forum". It was to find out what
other
> people's experiences were with a disease that nobody (the professionals)
> seems to want to talk about (perhaps mainly because they have no
> information to impart). My comment to this individual this morning was
> "they realy don't know anything about TM,, do they" Her honest reply was
> --"no". I mentionned some time ago in one of my ramblings that I was
able
> to find five or six papers in a Medline search and that one of the more
> recent was dated 1986. Now that is REALLY helpful! Someone said that a
> text she had read recently grouped individuals into three categories
--good
> recovery, moderate, and poor. I read that same neurology text when I was
> roaming the stacks of our university medical library and noted the book
had
> a rather "old" publication date.
>
> I again asked the infectious disease expert what she thought was
the
> actual cause of the neurological deficits in TM and she said she thought
it
> was the immune complexes that inflitrated the spine and caused
inflammation
> or death of nerve cells. She quite distinctly did NOT say it was the
virus
> itself. Believe what you want --I believe this is the current medical
> thinking. This brings up the whole question of immunology, of course. If
> one develops and immunity to "the virus" --and there is NOT just one
--then
> the likelihood of re-infection in low --if the immune system "forgets"
> --then it is going to react like it is a new infection --this concept is
> NOT new either --that is why we get various vaccinations repeated (ever
> stepped on a rusty nail and asked yourself when you last tetanus shot
was?)
>
>
> What are people doing to discover a(nother) or different cause and
a
> cure --apparently less than the Russians did to make sure their rocket to
> Mars made it out of earth orbit!!
>
> It is simply amazing to me how an insignificant comment can be taken
> out of context and made into a universal issue. I for one, NEVER stated
> Canadian Medicine was better at finding cures for diseases, nor did I put
> down American Doctors. You'd never know it by the replies received.
>
> If there is to a be a free forum, then some people will come for
> different reasons and their views should be tolerated. If you think a
milk
> allergy causes TM --so be it. If you choose to use this forum as a
> platform for comparing totalitarian states and democracies --so be it.
> This is all part of free speach --thank god --and if you don't like that
> concept then maybe you should remove your name from the list and decrease
> your stress level.
>
> Despite all these things I have heard some very interesting stories,
> many of which were and are frought with confusion. If anybody's
experience
> helps get better diagnosis/treatment -- great. What strikes me is the
> confusion between TM and MS --certainly they sometimes present with
similar
> symptoms. BUT transverse myelitis does NOT invlove the brian stem or the
> brain (by definition). Also an essential feature of multiple "sclerosis"
> is sclerotic plaques.
>
> Treatment!!! HA There is a good concept. Talked just minutes ago
to
> a lady about a machine called the ex'n'flex which is essentially a
> motorized bicycle that you sit in front of and get your legs moving
--makes
> sense to me. Yet, these are as hard to find in some rehab centres as
hens
> teeth. AND (maybe in this area US medicine is ahead of Canadian) I don't
> believe therapy consists of teacing a paraplegic how to transfer into a
car
> and sending him/her out into the big bad world. That is what hapened to
me
> basically at the five month point and I was to use a tired phrase "mad as
> hell" --fortunately --so was a personal physician friend of mine who
> blasted the local re-hab facility into "submission" --guess what --I'm
now
> going to do hydro therapy --where I can get these semi-functioning legs
> doing as much as they can without the impediments of gravity! Here I
> think, is one area where we need to be really PRO-active --TM is NOT
spinal
> cord injury and not too any people would argue that --the stats for
> recovery in those cases are NOT encouraging --and going to a rehab
facility
> where 99.9% are those type of cases can be VERY discouraging! TM is also
> not GB --alas --that latter having a VERY high full recovery rate.
>
> Anyhow, some of you will be happy to know I have now run out of
steam.
> I am looking for common experiences --and hope. I was an avid cycler
and
> my goal at the grrouchy old age of 48 was to join the 300 club in our gym
> by Xmas (that's for those who bench press 300 --when I was struck down in
> May --I was at 265 --maybe Xmas of '97 -- ;-)
>
> bryan