Your understanding of the number of cases is just what I
thought. I read somewhere, or was told that there is roughly one case in
1.3 million per year --making me one of the lucky 20 in Canada this year.
Soooooooo when I read that there is this physician who treated 1500 cases
since 1983 --let's see that's 13 year --roughly 200 cases in Canada and the
US per year --that's 2600 --gee!!! this guy had treated nearly half of all
the cases north of the Rio Grande --NOT!
My point here is that there seems to be a lot of
"mis-information". I too joined the list to hear about recovery. What I
hear is that there seems to be a lot of cases being mis-diagnosed, a lot of
unsubstantiated information thrown around, and a HUGE difference in
presentation. This, of course, would account for the various recovery
rates -- if two neurons out of two million are affected causing tingling in
the left big toe then the rate of recovery is going to be a lot different
than what I can expect (or not) when I had total sensory and motor
dysfunction below T12. As I have mentionned before, there is an
explanation of this various healing process in the old standby "Harrison's
Principles of Internal Medicine".
What I find ver frustrating is that at our rehab centre the
physios are very used of dealing with "spinal cord injury" and not so savy
about TM. The only good thing I heard in that context was that MS patients
really fall through the cracks. (well you know --good for us --very
unfortunate for them)
A study is now underway at St. Joseph's Hospital in Hamilton
Ontario where I think sixty patients are being given a drug --adp sound
familiar? --there was an initial clinical trial of "one" injection where
some patients who had total paralysis for as much as five years were after
this shot able to produce about 20% fuction in affected limbs. The trouble
at the beginning was that the stuff was available only in IM preparatiion
--and hence not very convenient --the current group is receiving pills --I
am not in the study because it was deemed impossible for me to go off all
other meds --oh well --next time --maybe there is some hope out there.
My own recovery has been very slow but if I am honest I must look
at the fact that when I left hospital four months ago I had to lay down to
put my elastic in my pony tail --now I can sit up and do it with both arms
elevated after I do my abdominal crunches -- the real kind --as shown on
T.V. I feel like a half cooked lobster most days with tingling and burning
below the waist --but today was almost able to kick my therapist in the
stomach in the pool --it's verrrrrrrrrrrry slow --but has not seemed to
stopped (fingers crossed) rather continued at a slow progression --and that
is in keeping with the post-viral theory --which I really think is more
than a theory --if your titres are normally nothing then go to 1/16 and
then you get neurological symptoms --well --you be the judge --this is NOT
MS although it may be related --but certainly the rate of recurrences are
NOT as high. I'm optimistic -- as is my Rekki master!
bryan