Re: TM or MS?

Deborah Capen (dcapen(AT)ivic.net)
Mon, 16 Jun 1997 08:42:53 -0700

After reading Aurore's description, which is an excellent phrasing to
describe TM, I might add, that, when I was struck, and paralyzed from the
waist down in a matter of 1 1/2 hours, (now it has been almost six months),
the first thing that occurred to me was the fact that I had taken my car
summersaulting in the desert exactly two weeks prior to that, and came out
"uninjured". (The car was flattened like a pancake, except for the
driver's side, which was only slightly flattened. ((Yes, my guardian angel
was with me, Thank God)) I was upside-down, undid my seat belt, crawled
out, got a little scratch on the palm of my hand from the broken glass). I
think my husband was more traumatized by it than me, since he was
following, and saw the whole thing. The paramedics at the scene had told me
that sometimes injuries crop up as long as a month later, to "immediately"
go to the hospital if I had any pain.

So, of course, that is the first thing that I mentioned in the E.R. The
first thing the E.R. physicians told me back was, "The symptoms you are
having have nothing to do with your accident, it is neurological in nature,
we want to send you to the Neurological Trauma Hospital downtown". They
were actually wise enough to know that it was beyond their knowledge, and
they were not going to second guess as to what was happening.

I was still positive the accident was involved, so in the ambulance, I told
the EMT's my story, when I arrived at the second hospital, I repeated the
same story, every single doctor that examined me told me exactly the same
thing. I did not have "all" of the symptoms for them to believe that my
symptoms were accident related.

I was admitted with "possible Guillian-Barre" symptoms. Only after three
times in the MRI tube and the blood tests to rule out GB,and EMG's spinal
tap, etc, did they come up with the TM diagnosis. I was still convinced
that the accident was involved somehow. (What other explanation for an
otherwise "totally healthy" person to go paralyzed unexpectedly?)

Only after speaking with Deanne Gilmur, who has founded the Transverse
Myelitis Association, and explaining the entire story to her, did I finally
believe the doctors were correct. I had told her that I had NO flu, was
positive about that, since my husband had gotten the flu, and I was sure I
would get it, but then didn't. However, the reason I had my accident, was
I was not feeling "100%", kind of queasy while driving the 4-hour drive to
Arizona, and fell asleep while driving (at 11:30 in the morning after
stopping for breakfast one hour prior to crashing). Deanne told me that I
DID have the flu, that it comes in different severities. I always thought
the "flu" was 24 hours of vomiting, diahrrea, etc. She said that it could
also be a light strain, where you just don't feel quite right. So I had
the flu, without even knowing it.

Sorry this got out of hand and got too long, but sometimes it takes a
thousand words to get one point across.

I agree with another recent posting, that the "aggressive diagnosis" of TM
in my case and the fact that I was put on IV steroids within 48 hours of
onset saved me from more severe and permanent damage. I am still affected
in the bowel and bladder department, but not incontinent, just the
opposite, and still have the pain and "weird sensations", but they are now
limited to my left leg and foot and right heel.

I thank the doctors for their wise decisions in my case, (they could very
easily have told me my accident caused my injuries, and sent me home to
live with paralysis) and I thank God every day for giving me the strength
to handle what symptoms I do have left. I know that others here are in a
great deal more pain than I am, and I hope that someday there will be help
for all of us, that some "miracle cure" will relieve everybody from their
pains.

I will close for now, before I REALLY start rambling and get off-track.
Debbie
dcapen(AT)ivic.net