I am new at TM too, but was reading "Able Lives" by Jenny Morris. It is
about women's experience of paralysis. I like it so far, but have only read
30 pages. I was impressed as TM was listed as a cause of TM. The book
deals with a lot of case histories. I haven't come across any TM cases yet,
but it's nice to know that TM exists in books, too. It has helped me with
the loneliness and feelings of alienation that comes with TM.
Please don't be too hard on yourself. You have made great strides and are
walking. It means progress, even if your balance is off, or sensation
differences. You are moving forward, even if it is without family, friends,
or physicians.
My opinion about Dr.'s is one of mistrust also. some have good intentions,
but others view everything as either black or white. If it's on the tests
then it is there. If it's not on the tests, then it's in the head. Of
course the human body does not work this way, even if they think they can
try to make us believe it to be true. When my aunt asked me if I thought it
was "all in my head," I responded by saying, "no, I don't. But even if you
believe it to be so, the only way I will get better is to do PT rigorously."
And I continue to do just that. Even young shildren wonder "why" about
everything. I think as adults, we just never fully outgrow a need to know
why about anything and everything.
Maybe I am the one babbling now, but I hope some of this makes sense to you.
Please continue to trust in yourself and know that I will always be here for
support, try to understand, and that you are NOT alone in this.
Carri
-----Original Message-----
From: Jennapause(AT)aol.com <Jennapause(AT)aol.com>
To: tmic-list(AT)eskimo.com <tmic-list(AT)eskimo.com>
Date: Wednesday, February 24, 1999 10:39 PM
Subject: please help!
>Hello Everyone,
>
>I am writing because I really need some advice, and because i really am
>feeling all alone right now. It seems that noone understands what I am
going
>through in my family. Not my friends, not my parents, and not my husband.
>This is very difficult for me to write. It is even harder to say the
things
>that I am going to say.
>
>When i started getting all the symptoms that I was having in the beginning,
>which was about 2 years ago. I had numbness in my hands, and arms, and
legs
>as well. I was not completely incontinent, but had many accidents without
>realizing it.
>I could barely walk because my legs would not hold me up, and I was so
tired,
>I just wanted to sleep, My legs gave me so much pain, as they still do now.
>I went to the near by hospital. I was given tests, and tests. They
admitted
>me in the hospital, and the neurologist did a spinal, which he said came
back
>fine.
>I have had MRI s and they have come back fine as well.
>My reflexes where inconsistent. At times I would have some and other times
>not, or they would be over reactive.
>my balance was off. I could walk if I dragged my left leg, it felt like it
>was asleep, and so cold inside.
>I felt like something was inside my legs eating them from the inside out.
It
>still feels this way. Icy cold, and tingly. Burning sensation as well.
>I was sent home, the doctor could not figure out what was wrong with me,
and
>so I went home with instructions to see him if it got worse.
>At this point my family urged me to go to a hospital that is suppose to be
a
>very good one here. Vermont. Fletcher Allen Hospital.
>I was there for over a week, and they did there testing and more
>testing......... I had everything you could imagine tested.
>The strange thing was that while I was there I lost the feeling in both my
>legs, and I could not walk at all. THe doctors came in and poked me and
>prodded me with all kinds of instruments. Hell one even took the skin off
the
>bottom of one of my feet. I guess he didnt belive me when I said that I
could
>not feel it.
>I was interviewed by a physciatrist. He asked me really stupid questions,
>but I was unaware at the time just what was going on here. I put my
complete
>faith in these doctors, hoping that they would figure out what was going
on/.
>FInd something that would make it all go away.
>I was totally distraught about what I was going through. I had doctors
>telling me that I had a myopathy, I was thinking what the hell is that. I
>was so niave as to what they did, and what they where telling me.
>The psychiatrist asked me very personal questions about my life. He wanted
to
>know if my parents drank,. if I had been sexually abused, and on and on.
>I was totally honest with him, and I then became labeled as having a
problem
>that was something that was in my head I guess.
>They could not find anything wrong on the tests so therefore what was
>happening to me was something that was physcological.
>Well I went home. I refused therapy, which angered them. It was close to
>christmas and i wanted to be with my family.
>THey sent me home in a wheelchair, and made sure I could operate it. I had
pt
>and ot at home.
>I went back to my neurologist about a month later, He put me on predisone.
>I stayed on this for about 2 months.
>After 6 months of being in that chair and not feeling my legs, and rigorous
>therapy, I started to have some sensations in my right leg.
>I am now walking with forearm crutches, and on medication. I still have
>severe pain, and the hot icy cold burning sensation in my legs.
>I get very weak, and at times my balance is really bad.
>Many of the problems I started with I still have.
>My neurologist told me later that I tested positive for Ebstein Barre,
which
>is the only thing that I did test postive for.
>He diagnosed me with TM about 6 months ago. The problem is that I was sent
>back to Vermont for the evoked potential test. WHen I had left the
hospital
>before, I never wanted to go back there.. I reluctently went. WHen I was
>discharged I was diagnosed with lower limb paralysis, and severe depression
>(I wonder why}
>He said I had a positive hoovers sign, but that the test was normal!
>ok
>now he tells my husband that if I went for another test, it would show if
>something is wrong, and let him give me some kind of prognosis as to what
will
>happen.
>He writes on the report that in his clinical opinion I have hysteria.
>Well my husband does not understand what tm is, and if you asked him, he
would
>not be able to tell you what it stands for.
>He offers no support, and does not believe that there is anything wrong
with
>me, It is all in my head.
>He told me that when a doctor looks him in the eye and tells him that
>something is wrong with me, then I will believe you.
>I wanted to earth to swallow me up whole! I finally got the nerve to tell
>ask him why he never wants to discuss this with me, and he tells me this.
>I feel so ashamed, and violated at the same time. I have never been so
>humiliated in my life. THe doctors, and my husband.
>I have noone to talk to, and I dont know what to do.
>I had asked everyone in the group that has had or has this problem with the
>testing and their doctors to please write a letter for me as though you
where
>telling the doctor yourself what they had put you through, and how you
felt.
>I want to show my doctor that I am not alone. I dont suffer from this
>disease alone.
>This muscular neurologist in Vermont that I saw nearly laughed at me when I
>told him that I has TM.
>I cannot fight this alone, and i need you all to help me.
>I really dont have any one else that I can turn to for help.
>I want them to know that the way they treated me was unexceptable.
>I am a person with feelings, and the more i learn about doctors the less i
>want to do with them.
>I put my complete faith in them, and they destroyed any faith I have ever
had
>in the oath that they have taken when they entered into the medical
>profession.
>I guess if this cannot be proven by machines what else is left but to say
that
>you are neurotic.
>
>I dont want my husband to treat me as though I have control of this illness
>and I can make it go away at random.
>Nothing i say to him will convince him that something is wrong.
>He has only gone to two appointments with me, and it was in vermont.
>What can I do.
>Please help me out.
>Thank you all so much.
>I am so sorry that this is so long, its just that i wanted you all to
>understand some things.
>I left out so much, but if there is anything else anyone would like to know
>please email me.
>Again
>thank you
>Love Jenny
>