My name is Susan and I was diagnosed with TM in April of 1997. A few days
before my attack, I had flu-like stomach pains and dizziness. Just after that
occurred I started to have some numbness in my left arm. Two days later I was
at work and in a few hours my left arm was usless. It then went to my right
arm and my the muscles around my mouth. I thought I must be having a stroke.
I am only 42. By the time I got to the emergency room, apparently my feet
were numb as well because I could not feel the pins that the neurologist was
sticking in me. After an MRI, he sent me to intensive care with what he
thought was either Guillian-Barre or Transverse Myletis.
The next neurologist did an immediate spinal tap and diagnosed me with TM.
The second day I was put on heavy IV steriods. By the third day, I could not
use either of my arms and could walk only a few steps with alot of help. No
one had heard of this condition and I had interns, immunologists, nurses,
phys. therapists and the like all quizzing me on what this was, where I had
been, what had I been exposed to, ect.
They guessed that this attack was born by a virus but they were never able to
isolate it. I had been under a great deal of stress the previous two weeks. I
was working twelve hour days, getting very little sleep, dealing with
stressful situations at work -- and I had just put my Golden Retriever to
sleep. I think my immune system just went on a holiday and the virus broke
in. Whatever the case, it left its callling card.
I was moved to a rehab facility the next week where I spent the next eight
weeks.
I was on steroids for the first three to four weeks. I think this may have
been part of the reason for my extreme weakness -- perhaps steriod myopathy.
Afer the steriods they put me on Klonapin, a drug that causes muscle weakness.
Go figure. Anyway, I finally asked them to take me off everything. Once I
was "drug-free" I started to improve. It may have been the timing or just a
coincidence. Whatever the case, I was glad to get out of that wheelchair.
A new neurologist suggested that I go to the Mayo Clinic in Rochester, MN for
another opinion. I went there in July. The swelling was in the Cervical area
of my spine and in my lower brain stem. They called this encephalomyletis.
Sort of a "catch-all" phrase. They told me that I had about a 10% chance of
developing MS at that time. They gave me no idea about improvements or what
to expect. No one seems to know the answer which is the most difficult part
about this condition.
I have not improved very much since about the second or third month of my
illness. Stress definitely plays a major role in my condition. Even minor
stresses, which most people don't even notice if healthy, can cause my
symptoms to rear their ugly heads. I am shaky most of the time. I have
tingling in my hands, feet and lower legs. I can't think or concentrate like
I used to. I have a constant weak feeling in my legs and arms. Yesterday, I
went to an event where we had applaud constantly. I found that I had to stop
at about person number five. My arms were shaky and I did not have the
strength to clap any more. My legs are similar. I can do only so much, and I
start to feel like overcooked noodles. It is frustrating because I want to do
so many things, and I constantly face the dilemma that I don't feel like it.
Does anyone else out there have similar feelings?
As I mentioned, it has been over a year. Just recently, I have had a
significant downturn in my progress. I fear that it may be MS. I was always
able to handle the TM because I thought it was temporary. MS is with you for
life.I had some nerve conduction tests yesterday and see the neurologist in
the morning for the report. I would like some definition on this, but not one
that includes MS.
I am so glad to find this support group. I have not even tried to talk to
anyone about this for a year. I now admit that I am afraid of what might be
ahead. It's good to know that there are people out there that truely
understand the fear and the uncertainty this condition presents us all.
In the last year, I have had an entire lifetime of stress. I have been
paralyzed, lost my father, and my husband and I had a falling out with our
business partner and have lost our jobs. I am not soliciting sympathy but
share this only because the significant role I believe stress plays on this
illness. I would like to know if anyone has found a good solution to dealing
with major and minor stresses in addition to the same ole diet and exercise
route.
Thanks for listening. My heart, my thoughts, and my prayers go out to every
one of you.
susan