Re: Introduction of my daughter

[Guest guest]

<< She has been experiencing electrical shock-type pains in her feet and

hands lately. I in my hopes, was thinking it might be nerve regeneration. It

sounds like this is a common complaint among CMT people. Any advice? We have

not seen the DR recently. >>

Hi a

I am not a medical person, but my neuro told me the electrical shocks are

messages that the nerves are dying, and protesting it. Sorry! Some CMTers

never have them, but many do, at least for a while. Mine have been severe for

6 years, but now they seem to be tapering down, coinciding with increased

weakness.

Neurontin helps some CMTers who have that kind of nerve pain. I don't know

what ages it helps, and it does not help everyone, just the lucky ones.

Has joined the CMT teen group?

The teen years are hard, but with an older brother to help get her launched

she should be fine.

Kat in Seattle

[Guest guest]

a,

I know your daughter is 13, but maybe she would like to correspond

with my 9-yr old Katey. (By the way, Barbara, feel free to let Alice do

this too...)

Katye has made some great friends through the MDA organization. She attends

MDA camp in the summer and so far, after 2 years, LOVES it. Campers and

counselors alike write each other quite frequently. Katey is extremely

active and mobile, but has gotten great benefits meeting children of all

ages with other neuromuscular diseases and seeing the broad spectrum of

abilities and disabilities. She has a much better sense of where she fits

into the bigger picture.

If your daughter is interested, have her email us at warrenre@....

I'll make sure Katey sees the email and gets a chance to respond.

I also think someone has started a CMT list for children - I think it is

Alisha??? That may also be a great outlet for your daughter.

Ruth

>From: mikerobertac@...

>Reply-To: CMTUS (AT) onelist (DOT) com

>To: CMTUS (AT) onelist (DOT) com

>Subject: Introduction of my daughter

>Date: Wed, 15 Mar 2000 19:01:19 EST

>

>From: mikerobertac@...

>

>Dear all,

>

>I have spoken with a few of you already but let me introduce myself to you

>and my daughter. My beloved daughter was diagnosed with either CMT 2

>or Kugelberg-Wielander at age 8. It appears that she has CMT which we are

>happier about than the other. She has and is still learning to adapt. She

>has

>some amazing people in her life who love her for who she is, not the way

>she

>walks, or sits, or the way her hands look. Yes, she has had her fair share

>of

>ridicule but like every other adversity, she seems to rise above it.

>She is now 13, that wonderful age of self reproach and self-doubt. When she

>tells me she hates what has happened to her and who she is, I tell her how

>much she is loved and that she has a purpose on this earth; she will need

>to

>find it. She wants to be a child psychologist.

>Her 17 yo brother used to be embarrassed by her. He is now prepared to

>punch

>anybody that gives her a hard time next year when she goes to his high

>school. That is a great step for him too.

>But more than anything, as I read all the notes from you all, I realize

>that

>you all too get tired easily and that reminds us not to expect too much

>from

>her. I think she pushes herself to hard.

>She has been experiencing electrical shock-type pains in her feet and hands

>lately. I in my hopes, was thinking it might be nerve regeneration. It

>sounds

>like this is a common complaint among CMT people. Any advice? We have not

>seen the DR recently.

>WE live in the great rainy Pacific Nothwest. I am waiting for some

>SUNSHINE!

>

>Thanks for listening

>a

>

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