Newly diagnosed

James R. Davis (jamesrdavis(AT)deseretonline.com)
Sun, 21 Mar 1999 23:59:40 -0800

My name is Mary Jeane. I am 42 years old, happily married, have six
children and was just diagnosed this week with TM. After reading much of
the information and many of the archived posts from this list, I am now
beginning to feel a little frustrated that my neurologist was so stingy
with info about this disease. He basically told me that TM is an
inflamation of the spinal cord that usually clears up in about 4-6
months...he then qualified the diagnosis by saying that about 20% of TM
sufferers will eventually end up with MS, but he saw it as remote at this
point. As I left his office I thought...wow...that is great news, but then
I went on the internet to gather information and was amazed by what I read.

Compared to some on this list, I have gotten off very easy....about the
beginning of December of 1998, I noticed that part of my back was going
numb and then as the month progressed it started to spread all over my
torso on my right side. I went to see my primary care dr. and he just
about went crazy and sent me for an MRI of my brain and told me all kinds
of scary things like brain tumors, cancer etc. and he also brought up the
possibility of MS. (By the time I got into the primary care dr. the
numbness had spread to my leg and arm, but fortunately I was still able to
walk and use my arm) I was on pins and needles all weekend waiting to get
the results and talk with the neurologist that I was referred to. Nothing
found...sent for more MRI's of my spine...nothing found....evoked
potentials...nothing found....spinal tap....slightly elevated protein and 1
of the bands common to MS...so that is when he tells me it is probably TM
and it is no big deal, just get on with life and not worry about this anymore.

While I will acknowledge that I can still function pretty normally...having
half your body numb is not something you can just forget about....and there
are so many other things, like feeling like I have the flu because I ache
so much on some days, and the fatigue, muscle cramps at night, my hand on
my numb side is always freezing cold. My knee and elbow are so stiff that
it is hard to bend them. Yesterday I went to pour some cereal in a bowl
and dropped the box because I couldn't grip it with my hand....it of course
spilled all over the place. I am an avid walker, but my numb leg, although
functional, slows me down...the joints at my ankle and knee start hurting
and I wonder if I am putting stress on them when I exercise, because they
are unstable due to the numbness. My 3 year old daughter is deaf and I am
learning sign language and I find that my signing ability is impaired
because of the numbness.

The sum total of all of this is, after reading about all of you, I worry
that this is not just a six month thing I am dealing with, but much
more...how fully will I recover? I am most grateful that I did not end up
in the hospital...I am most grateful that I can carry on with most
everything I have to do, but now I have so many questions and feel
desperate to learn as much about this as I can. I am anxious to continue
to read your posts and learn from your experience. Thanks,

Mary Jeane