TM was diagnosed June ‘97, but had a very slowly start. Two years
before that date I had a very stiff feeling in my upper legs. First a thought
it was condition, later on I went to a doctor, who could not find anything
strange. After a half year it disappears by it self. A year before date I had
a strange feeling under my feet , like walking on sand or little pieces of
grid. Witch kind of shoes I tried, the feeling stayed. Also that time sexual
problems started, could have many reasons, stress or alcohol, not the
kind you go to a doctor with as long as it isn’t stopped completely. That
happened in February, I was very busy on my work, so that must be the
reason. After a short holiday in April the stiff feeling in my legs returned,
later on I got the feeling of a rope around my waist and pain in my back.
I went to my doctor ,who send me directly to a neuro. That day bladder
stopped completely. After a lot of tests I realized that something was very
wrong with me. They gave me Methyl Pretnisolon (steroids), 1000mg a
day, for 5 days. Everything disappears and I had a feeling of borne
again. At first site the neuro diagnosed Multiple Scleroses but he had to
wait for the test results. After a few weeks all the bad feelings returned
and I went down for the second time to the hospital. Again 5 days
steroids and the diagnose TM. Photos showed it was at T7-T8. Three
weeks later the same story and after that I was send down to a University
Hospital, the neuro aspected to find a virus but there was not any. At the
University I got every test you can think of. They diagnosed also TM,
caused probably by a bacteria who had the same structure as my spinal
cord. After 6 weeks I was send home with the message, it will go over by
it self. Back to my neuro he told me that I have to not to count on
complete recovery. Now one year later I just returned from the hospital
for the nines time. The steroids got back to 3 times 1000mg, in my best
part of these periods I can walk about 300 meters, in the bad days hardly
5 meters. All more I have the use the wheelchair. Motor control is better
as a year ago. Bladder has stopped complete from October. I have no
pain at all, always cold feet and the strange feeling in my legs , feet and
around the waist staid. Sexuality never returned. For the spastic I have
got medicines. My future expectations are not well. I can’t work anymore,
can’t drive a car, not with the kind of roads and traffic we have here in
Holland.
Is there anyone with also such a kind of idiophatic TM. And what are his
future expectations. I am a year from the diagnose now, can anyone with
the same kind of experience tell me how it maybe could be after two
years or more?
Wim Deenik.....jwdeenik(AT)westbrabant.net