Well, 17 years and a few hours ago I was sitting at my desk at the
University of Cincinnati. I had left the University of Nebraska the
previous December and at the local level things were O.K. On a
national level I was still very active in the rehabilitation
profession. Anyway, as I sat there I noticed that both feet were
tingling. I looked down and found that I had my feet wrapped around
the base of my chair. I brushed it off, finished my appointments and
went home. That evening, I noticed that my left leg was numb up to
my knee. When I went to bed I noticed that the numbness was just
above my knee. The next morning I felt some numbness in the rectal
area and a sore spot at the left scapula. That afternoon all
went......long story posted elsewhere but I will say that I did
experience improvements for 18 months.
Today, I have had no exacerbation's. I still have marginal control
of my bowels and bladder and I have a fair amount of spasticity.
My most significant problem is a central pain syndrome at T4, the
point of my compression. I have a band and the pain is constant
(somebody called it punishment by the bra god..which I guess means
that I'm supposed to know what it feels like to have a bra fit too
tight ( : - ( ). I take a lot of pain medication and have tried
acupuncture, massage and magnets and none of them provided me with
much relief. I do know others that got relief from all three. Until
two years ago I was walking and my Neuro said that the main reasons I
walked was because I wanted to. For other reasons than TM, I lost
both legs, one above and one below the knee in 1996. So like many of
you with lupus and other ailments, I have the pleasure (yaga) of a
secondary problem.
I had better stop now or it will begin to start sounding like I'm
having a pity party for myself. I can say that all of it has made
me a stronger person. For the newbies in particular I would say,
keep your faith in yourself and those around you. Keep a positive
attitude and don't forget to do those exercises. If you don't use
it you will loose it and I do mean ALL body parts both above and
below the neck.
I have been with the group since early 1997 and cherish the support
and input from the group. I have had my picture posted on the tmic
home page and really wish more people would do it. My wheelchair and
I will be in Seattle next August and I look forward to meeting you all.
Take care.
Doc