Re: new subscriber
mlmohm (mlmohm(AT)prodigy.net)
Fri, 08 Aug 1997 11:47:59 +0000
JHarper33(AT)aol.com wrote:
>
> In a message dated 97-08-06 04:17:29 EDT, you write:
>
> > 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
JHarper33(AT)aol.com
All our T.M. symptoms sound pretty much alike. I'm older them most of
you 68, going on my second year of T.M. I also have two other things I
have to combat. I have Rhmotoid Arthritis, and Restles Leg Sydrome,
which is an interesting disease, and which most Docs don't know about.
I take what medications I need to releave the pain I feel from my R.A.
and R.L.S. so I am probably a "junkie" by now, but just don't care.
Neurotin seems to be the drug of choice for most of the Neurologist, I
also take Zanax for relief of the legs, and Percoset or Perost-N for the
pain. I also use Methotrexsate and Imuran, which are both cancer drugs
for my R.A. I use ice for the "lump" in my lower back. When ever I have
a lot of stress the lump seems to tie up more. Some day I feel like
mylegs have a bag of concrete tied on them. There are days I cry alot
and feel like ending it all.
How do you subscribe as a regular member? Its interesting to see what
all the thing we try to find relief.
Mary