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Thread: Charcot-Marie-Tooth Disease

  1. #1
    Join Date
    Sep 2008
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    Charcot-Marie-Tooth Disease

    Not that I'm looking for more problems, but does anyone have any personal experience with this?

    TIA,
    Marian

  2. #2
    Join Date
    Jan 2006
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    Marian,

    I replied to your MS post.

    Mary Lou
    Mom to Jamie age 21-diagnosed at age 12-spinal fusion 12/7/2004-fused from T3-L2; and Tracy age 19, mild Scoliosis-diagnosed at age 18.

  3. #3
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    Sep 2008
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    Quote Originally Posted by Snoopy View Post
    Marian,

    I replied to your MS post.

    Mary Lou
    I'm not sure I understand. Did you PM me?

  4. #4
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    Sorry about the confusion! Glad you found my post, though.

    Is there specific things you want to know about CMT? If so, feel free to ask and I'll try to answer your questions.

    Mary Lou
    Mom to Jamie age 21-diagnosed at age 12-spinal fusion 12/7/2004-fused from T3-L2; and Tracy age 19, mild Scoliosis-diagnosed at age 18.

  5. #5
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    Sep 2008
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    Quote Originally Posted by Snoopy View Post
    Sorry about the confusion! Glad you found my post, though.

    Is there specific things you want to know about CMT? If so, feel free to ask and I'll try to answer your questions.

    Mary Lou
    Thanks, Mary Lou.

    I guess the biggest question right now is about symptoms. My dd does have high arches in her feet but walks flat-footed. She seems to have cold hands and feet (but maybe that's b/c I don't have the furnace at 75).

    I guess I'm concerned b/c dd does have a left thoracic curve, and from some things I've read, that kind of curve is atypical and could indicate an underlying condition. I remember when her surgeon thought she might have a chiari. Thank goodness, she didn't.

    Just trying to figure out if there's something else the docs should be looking at. I would hate to see her go through surgery and have something else surface later--although I know there are no guarantees--life is not scripted.

    Thanks for any input. You can PM me if you want or post to the forum if you think that others might be interested in the topic.

    Thanks,
    Marian

  6. #6
    Join Date
    Jan 2006
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    Marian,

    It is so hard to say exactly what symptoms are related to CMT as I'm sure they can vary greatly depending on the severity of the CMT.

    In my mother-in-law's case and several other older family members, they tend to have a lot of pain in their legs; no feeling in their hands and feet; mother-in-law and one aunt has diabetes (not sure if that's related to CMT or not); legs feel heavy; their thumbs don't work right; one cousin is very thin and looks as though he has lost all muscle tone; other family members are overweight.

    We are not sure if Jamie has CMT or not, but she is the opposite of your daughter--she has very flat feet and always has and is always warm! Jamie was never good at running. When she runs, she doesn't run smoothly. Because of the CMT? Not sure. Jamie has turned her right ankle from the time she was a 3/4 y.o. child. It got to the point that her tendon was so stretched, they had to do surgery to correct it. She has very tight hamstrings. She doesn't have reflexes in her knees. She has Scoli and Kyphosis that progressed rapidly even though she was completely done growing.

    One thing I've noticed in people who have CMT is this: look at your own thumb where it connects to your palm. You'll see that it is pretty filled out, right? Touch it and see how it feels. If you were to look at my mother-in-law's hand, here's is not filled out and feels very different than mine. Now remember, she has had CMT for many, many years so you might not notice any difference.

    My advice would be to talk to the surgereon and ask for a referral with someone who specializes in CMT. If there's symptoms of CMT, maybe you'd like to do some further testing to see if she does have CMT.

    Even with a diagnosis of CMT, it wouldn't have changed anything with Jamie's surgery. It would simply have given an explanation as to why her curves were so high and progressed so rapidly.

    Hope this helps and doesn't confuse you more.

    Mary Lou
    Mom to Jamie age 21-diagnosed at age 12-spinal fusion 12/7/2004-fused from T3-L2; and Tracy age 19, mild Scoliosis-diagnosed at age 18.

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