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Posted by James on November 09, 2000 at 07:09:35:

In Reply to: transverse myeletis posted by mike on February 26, 2000 at 20:43:09:

: My best friend has been diagnosed with this condition and i would like to know if there is anything, or anyone who could help his recovery.

Hi I just got this this morning.
It was called transverse myeletis. (Like polio myelitis, only caused not by
the polio virus, but by an unidentified one.) A number of children in this
town have had it. Nick's was accompanied by very high fevers and general
wasting away as well as the pain and muscle loss in the specific areas (arms
and especially legs).

Nick regained all of his motor function, but never did stretch out his
Achilles tendon enough, so he walks on one toe rather than on the entire
foot. Nick still has one calf that is narrower than the other, but that may
be due to the way he walks. He is lucky. Many of the children never got
fully back to normal. One is permanently in a wheel chair. The likelihood
of recovering function and form comes from the degree of destruction of the
nerves in the spinal chord, apparently. But the doctors have no way to
predict what the outcome will be. We believe that the early and constant
physical therapy helped Nick regain both form and function. It was a
difficult course for him, however. The pain.

The doctors tested for everything including AIDS. The diagnosis is based on
ruling out all the other possibilities. The mylograms were the tests in
which doctors stick needles into Nick's legs. Worse were the spinal taps
where the doctors took out spinal cord fluid. Of course, there were
literally hundreds of tubes of blood taken.

The treatment was bed rest for months. And, the doctors finally gave Nick
mega doses of steroids and that seemed to finally get rid of the fevers, or
coincided with the end of the course of the virus. Neither the doctors no
we will ever know if the steroids helped.

I hope your friend has doctors s/he trusts. It took the neurology,
communicable disease, aids, pediatrics and muscleologists' (I've forgotten
their proper name) departments to diagnose Nick's illness. If there is a
medical school/training hospital around, that will be your friend's best
bet. Another tip: I had Kaiser to deal with, so had to raise hell to get
Nick into the specialists at the outset. Once there, the specialists
themselves made the inter-department referrals to other specialists fairly
readily. That may be the case with any HMO.

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