> Hi, I've just subscribed, because I would like to find out more information
> on Transverse Myelitis. My story- I was 27 when I was diagnosed with
> Transverse Myelitis after becoming paralysed from just under my breasts
> down. It was a terribly scary time, but after a fairly brief period of
> time, was walking again and trying to get on with my life. What I want to
> know is how other sufferers deal with the on-going symptoms, and if there
> is any solution or cure. I still self-catheterise and have to take
> medication so that I don't "leak" between catheterising. My genitals are
> numb, so sex isn't great. I get tired. I don't know whether this is a
> symptom or just a by product of life. Can anyone share their syptoms with
> me so that I know what is normal and what is not. My neurologist stopped
> wanting to see me as soon as I was out of the hospital, telling me that
> whatever improvement I made in the first year and a half after getting
> Transverse Myelitis was as good as I was going to get. Is this true? Have
> other sufferers recovered fully after many years? Please let me know. Do
> other sufferers just feel like crying sometimes, and feel guilty about it
> because to everyone around you you look find and whole?
>
> - Tracey
One problem with TM is that there is not a definite "normal" situation: so
much depends on which nerves were affected, how severely, etc. But your
symptoms do fit in with what many on the list have expressed. My two year
"anniversary" with TM is coming up Sept. 1, and the lingering symptoms I have
are numbness in both calves, feet, and left hand, pain that comes and goes in
left hand and arm, slight swelling in hand and calves, a ticklish type of
feeling in my right knee that sometimes spreads to my thigh and ankle, right
leg does not feel cold and minor pain and right knee "goes out" unexpectedly
sometimes, frequent urination and occasional leaking, occasional urinary
retention, constipation, pain in back between shoulder blades, sometimes pain
in back between waist and bottom and sometimes a feeling as if there is a rod
there in that part of my spine, numbness in genital area that varies in
intensity, awkward gait, sometimes balance problems and dizziness (although
I've had trouble with dizziness for years and was told once, before TM, that
it was related to low blood sugar.) I also have occasional odd things occur
-- a feeling of weakness in my jaw, or a muscle that trembles off and on over
a period of days, and then stops, and other things like that.
Most of my improvement occurred in the first few months, although there are
still areas of improvement slowly and occasionally. But some on the list
continue to improve even years later. Unfortunately, some have little or no
improvement at all -- no one seems to know why.
I'm surprised your neurologist didn't want to continue seeing you. I'd try to
find another. In one sense there isn't much they can do, but there are
different drugs for different symptoms that you and he or she could try to
find out what works best. I saw my neurologist at intervals for the first few
months and now only see him if/when I feel I need to. He's has been great to
answer phone calls, listen, explain, advise, and calm and reassure.
There are many days I go on about my business and try not to concentrate on
TM and to be glad for what I'm able to do. But there are days when I get
very, very down. I think probably anyone with chronic symptoms of any disease
goes through that. I've come to recognize the "down days" as something that
happens periodically (often just after a flare-up of symptoms or just before
my period) and try not to stay there. Often a good cry, a reassessment and
focus on what I do have left and can do, and a lot of prayer get me through.
"Looking normal" can cause people to misunderstand, and we fear if we talk
about our physical problems a lot we'll be thought hypochondriacs.
There are archives of all the letters that have been sent to this list. It
might be helpful to browse through those and compare notes. The address for
that web site is:
http://www.eskimo.com/~jlubin/disabled/tmic/
Feel free to write any time, here on the list or privately. This "support
group" has been one of the best things I've ever found, and the people on
here are great.
Barbara
John 17: 3 And this is life eternal, that they might know thee the only
true God, and Jesus Christ, whom thou hast sent.
Isaiah 53:4 Surely he hath borne our griefs, and carried our sorrows