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As I read your letter, it sounded like one I could have written word for
word. I am going nuts not knowing what is wrong with me. My TM
started in 1975 with terribly painful spasms in the large muscles in my thigh
and my bladder was beginning to 'not work'. I walked, very weakly, into
the hospital on a Saturday night and when they finally cathed me the next day, I
filled up two bags. Dangerous!! I believe it was on that Sunday that
a neurosurgeon came to do the spinal tap. I remember by then my legs were
becoming paralyzed and it was difficult to roll up into a ball. The NS
diagnosed it as MS but I never saw him again and my neurologist who
followed me for the next five months always said it was TM and not MS. I
saw the neurologist a couple of times after I got out of the hospital. I
think the last time was after the birth of my son in 1979. Shortly after
that we moved to NC and I am sure he retired.
I was fine for 30 years until several years ago. I had a job as a
medical transcriptionist and sat at a computer 10 hours a day. I started
falling and couldn't walk up the one step it took to get into my apt.
Finally one of those falls resulted in a spiral fracture to my right leg and the
falls and strains and sprains continued. Lots of reasons to stay off of my
feet and stay in bed. Somewhere along the way I remember having an open
MRI of my spinal cord which was clear but I continued to worsen. I had
seen a neuro here in Charlotte before the falls, etc because of some weird pain,
etc and by the time April of 2005 came and I couldn't walk, the neuro wouldn't
admit me because I hadn't seen him in two years or so. Finally, my
husband's MD agreed to admit me and while in the hospital, some neuro was sent
in on consult but he just said I wouldn't fit in his MRI or CT so come back when
I had lost a bunch of weight. He basically blew me off. With the
help of a very strong 'industrial' walker I was able to take 7 steps in the
hospital which qualified me to go to rehab. After about 3 weeks in rehab I
was able to take maybe 30 steps but then I come home and only get a chance to
walk twice a week with PT at home and I lose everything quickly. After a
short trip to Myrtle Beach with my husband going to a conference I came home to
a high temp, throwing up, a UTI, I guess, etc, I was back in the hospital.
This was less than a month after getting out of rehab. Come to find out I
had blood clots and my blood sugar (I am not a diabetic) was way high. I
was a sick puppy. This time I couldn't take any steps and rehab wouldn't
take me back so I got shipped off to a nursing home about 1 1/2 hours
away. There were a bunch of young kids running the rehab there and their
hot topic every day was where they were going for lunch. When I left there
in August, I could barely take 10 steps. Again, I came home and lost all
of my strength. My feet have not touched the floor now since Sept of
2005. I am stuck in bed, stuck in my room (wheelchair won't fit thru the
door) and stuck in the house. I called some neuros but the wide wheelchair
prevented me from getting an appointment with any of them. I have had two
suicide attempts recently but only one admission. They don't have staffing
on the psych ward for a patient needing so much medical attention.
I do have a couple of things I am cautiously optimistic about.
Supposedly a motorized wheelchair has been approved and ordered and would
be able to ride a special bus to appts and a transfer system that will help me
slide from one place to the other. My doctor doesn't know what to do with
me. I can't really go to him - he is a bariatric specialist - yet my old
wheelchair didn't fit through his door and my ins co won't pay the 800.00 round
trip fee to see him anymore. Thank goodness he finally RX'd Flexeril after
months and months of pain pills that didn't help. I was in constant pain
even sitting on the side of the bed but the Flexeril seems to have kicked
it. Unfortunately, he will only give me a minimal amount as I am a
'suicide risk.' I also seem to be still getting Hydrocodone, by the Grace
of God, and Ambien and Clonazepam which my psych started me on about 5 years
ago. I can't go a day without them.
So that is my story, I don't know where I am, I don't know where I am
going but I know I am tired of looking at these four walls and this bed. I
think it has been probably 6 weeks since I have been out of this bed even tho I
have my own lift. Six weeks ago was the last suicide attempt. Damn
that charcoal was nasty!!
Hildred in Charlotte, NC
It might be hot outside, but I can't go outside to tell you! (One
positive thing!)
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