It's been 8 years since I contracted tm. Mine was a classic neuro textbook
case. The text I have a copy of and it was my bible for years is CLinical
Nueurology Vol 3. Chap. 48. In this analysis they cite tm as coming on
after some infectious disease or viral event. I couldn't link mine to any
earlier illness. Regardless of cause, my sysmptoms were leg weekness, pins
and needles in the feet loss of feeling and temperature. Loss of functions
from C-6 down. I could not walk for several weeks, lurched around for a few
more, went back to work after 4 months of mostly bedrest. I was so
fatigued, I only worked part time for a year before I started getting
stamina back. I am a wildlife biologist in Alaska and I had to move from
doing field work to staff work in our Regional Office. That and my
atheletic endeavors have been the biggest changes due to tm. Here's what
the neuro book says and what I was quoted by doctors "Recovery begins
between 2 to 12 weeks after onset and continues for up to 2 years. If there
is no improvement by 3 months, it is doubtful if any will occur. Good
recovery with no deficits or only minor motor or sensory residuals should be
expected in about one-third of patients. Another third will show only fair
recovery and have significant motor, sensor, or sphincter deficits. The
remaining on-third will show no recovery....annual incidence rate to be only
1.34 cases per million."
I find it rather convenient that they divided the recovery into equal parts
of poor, medium, good. I doubt if enough cases have been looked at that
they have a clue. Maybe groups such as ours will help bring decent sample
sizes to studies. What it says and what I was told about recovery is
definitely not correct. Recovery continued after 2 years and little
improvements continue to this day--eight years later. Doctors didn't want
me to run because it agravated my symptoms (more numbness, tingling and
girdling around my middle) but I "made a deal" with my neurologist that I
would not run until symptoms subsided so I felt assured that I was not doing
permanent damage. When I first started I would run one day, wiat 4 or 5 and
go again. Gradually, over a year I was running every other day and after
several years I could exercise without bring on symptoms. Exercising is
very important to my sense of well being. I swim and bike as well. I
usually exercise at something for an hour a day. I've found yoga very
helpful for my balance. This past year at almost 8 years since tm. I ran a
16 mile run over a mountain pass. I was pretty slow but I jogged away
steadily and felt happy to be participating. I cross country ski a lot in
the winter and that seems easier on my body --less jarring. I was thrilled
to read David had run a marathon. Though I ran 4 before tm, it has seems
outside my limits, maybe I will reassess. I've found I have to pace myself
in ways I didn't have to before. I work fulltime, have two busy teenagers,
exercise and no doctors take seriously that I'm tired! I have had one
relapse of tm at about year5. Then I did a lot of research and found out
that this is possible. I lost leg strength and could barely get up stairs,
much less run. That lasted 6 months but I recovered with a lot of rest and
actually came back with fewer deficits then before. Now I'm more careful
about not getting overtired because I think I was really pushing things when
I had the reoccurance. My brother is a physiologist who has looked into the
tm literature for me and feels that it is autoimmune related and keeping
rested and healthy is crucial.]
I wish now I had kept a journal about recovery, it's hard to pinpoint when
a certain symptom went away. I still don't have hot and cold sensation, and
obvious deformity in my hands (which hands are crucial at C-6). I don't
know why we all have such different recovery rates but all I can say is keep
working at it and stay rested. Like all of us I hope our stories can lead
to some breakthroughs in the neurological sciences.
Keep looking for a doctor you like. I've had the same problem. Have also
heard wonderful things about the Mayo clinic in MN and FL.
Donna Brown -- thanks for the journal references. The scientist in me can't
resist a decent literature search.
Mimi Hogan