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