I have just seen your note on the MGH Neurological Forum. I developed TM in
1993, have been on the Internet for about a year but only this week thought
to type the words Transverse Myelitis into a search engine, having read an
article about the illness in a UK newspaper.
A bit about myself. I'm male aged 49, married with a wife and two daughters
aged 18 and 20. I live in Wilmslow, Cheshire and work in Manchester (England
that is). My story is not dissimilar to most of those on the MGH Forum. I
had a cold/flu that hung around for two weeks or more in the Spring of 93. I
then developed severe backache one day, the legs went progressively weak and
within 24 hours I was in Hospital. Within 48 hours I had lost all feeling
and movement from about the waist down. A MR scan led to the TM diagnosis.
I felt very rough for a week or so but then recovery started. I had
physio-therapy, was out of hospital walking after 5 weeks and back at work,
initially part-time and full time in three months. I have to say that
recovery came to a halt after about six weeks. Symptoms that remain now are
the classic ones of tingling legs, cold on the surface; feet that feel
bloated and with a pins and needles sensation. I have a numb spot at the
base of the spine and a tight feeling around the groin. All of this I've got
used to and think little of. The most inconvenient remaining symptom is
partial incontinence and less than total control of my bowels! However with
the use of pads, self catheterisation each evening, and careful thought as to
when I should wear light coloured trousers (pants to you) I get by without
too much difficulty. I used to run a lot before the illness (longer
distance, marathons) and managed the London Marathon in 1994 about a year
after | was struck down. A record slow time but I made it.
I'd given up finding fellow sufferers having found no mention in general
reference books and blank looks when I used the phrase transverse myelitis
even from most medical people. The joy of discovering the subject on the
Internet comes from not feeling quite such a freak.
I have found a US Self Help Group also via a search engine. Are you aware:
Transverse Myelitis Association, Deanne Gilmur, 3650 Tahoma Pl. W., Tacoma,
WA 98466. Call (206)565-8156 (eve).
I look forward to hearing from you.
Regards
David Pearce