Charcot-Marie-Tooth Disease Support Group

Charcot-Marie-Tooth disease, also known as Hereditary Motor and Sensory Neuropathy (HMSN) or Peroneal Muscular Atrophy, is a heterogeneous inherited disorder of nerves (neuropathy) that is characterized by loss of muscle tissue and touch sensation, predominantly in the feet and legs but also in the hands and arms in the advanced stages of disease.

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  • deleted_user

    AAOS Says CMT causes no pain

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    Last night i was searching the internet about CMT and arm pain and this article came up... " People with CMT often lose some sensation in their feet and hands. The lack of sensory feedback to the brain may affect a person's ability to feel normal pain. As a result, minor injuries, such as a blister on the toe, may become infected without notice.Although Charcot-Marie-Tooth disease typically does...
  • Abellz

    New to the CMT desease

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    Hi I'm new to this group thing. I am 20 years old and just diagnosed with CMT. I was wondering if any of you had any tips on how to make it a little better. Can I exercise? Of so, what kind? I don't really know about the disease and I don't want to make it worse. Thank you!
  • deleted_user

    New to Group

    6
    Hello everyone. I'm new to this group and hope to offer any advice or support to anyone suffering with Charcot Marie Tooth like myself. The Muscular Dystrophy Association has been very helpful with medical treatments but it's difficult in more ways than just physically. Thanks for having this group!
  • yasudab

    cmt disease 2

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    Actually here is the correct link to my youtube page for CMT disease. please check it out and subscribe. https://www.youtube.com/channel/UCB2vgK-fp_ctRrav-3-rJvw
  • yasudab

    cmt disease

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    Hi, I just created a new youtube channel and the effects of cmt disease on me. Here is a link to my channel. I will be uploading more soon. https://www.youtube.com/channel/UCB2vgK-fp_ctRrav-3-rJvw
  • deleted_user

    Drop Foot Help

    Hi am wondering if theres anyone out here with drop foot that could get intouch with me. I had my 2nd back surgery and came out of it with drop foot having a really hard time dealing with it all. If theres anyone that has it would really like to talk with you about it... Thank You and have a wonderful day...
  • deleted_user

    Living with CMT

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    I recently joined Daily Strength as a way to search out others who have lived and struggled their whole lives with CMT. I have experienced the many kinds of physical losses you have lived through in your own life times, and the loss of past relationships. I have read through many of the discussions in the CMT area and agree with many of your insights. As a young man I too wanted to hide my...
  • meeraM

    food !

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    Just wondering if any has had an success with diet? I am thinking that the anti-candida diet- no yeast, wheat, grains, dairy, sugar etcis highly effective with reducing pain and inflammation, and the yuk feeling.... but then i feel so faint that I can barely function.any suggestions to boost energy and blood sugar ?Thank youMeera
  • AlexGraham

    Falling Down a lot, recently diagnosed with CMT

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    Hello.It took my two neurologists 10 years to finally diagnose me with CMT.I started going to see them at the age of seventeen, and finally I have some answers which is a relief.According to my doctors I have a serious case of this disease and it has progressed quicker than most people they've seen with the disease.My main question is how do I deal with falling down all the time? The docs told me...
  • cstanke

    Advice for 40yr old CMT male at a turning point...

    7
    Hello all, I'm looking for general advice from folks who might have been in my situation before. If you're not interested in the long story, look at the bottom for the "too long; didn't read" (TL;DR) tag...I'm a 40 year old male with CMT (1A). Symptomatic onset (pes cavus, atrophied lower legs) was around age 10 or so and diagnosed by an especially astute pediatrician. Years later, both my mom...
  • CountryBabiDoll

    The internet is no help

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    My youngest brother has cmt 1a. I wanted to ask what are some of the long term effects for cmt ? Does this also effect the learning process? What is some advice you would give a parent for raising a child with cmt 1a? Thank you for any advice given. I have done some research but that has only gotten so far. Thank you again and have a nice day
  • meeraM

    Diet and CMT

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    Hi All,It's been a while since I have written.. hoping everyone is doing ok! i am still plodding along.. just! I am about to go on a gluten free diet and wondered if anyone else had discovered anything about the link to gluten or diet.I recently went on a saturated fat free, sugar free and wheat/yeast free diet..... consequently I was eating dust! Nothing else left :) I felt fantastic , reduced...
  • deleted_user

    did anyone get genetically tested?

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    If anyone has been genetically tested for CMT, can you tell me how you did it? I need to be genetically tested for CMT however Athena Diagnostics wants $12,000 up front and I don't have it. Does anyone have any suggestions?
  • StrongCelticLass

    Wondering if I have CMT

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    Hi all! Well I do think I might have CMT or some like it.I have the wasting away of the muscle in my legs that are bowed,very skinny calves and bony feet,except my feet are completely flat not arched at all.From my elbows to my hands I'm very bony.I also have had extreme burning/electrical nerve pain in my bones of my lower limbs.I also experience lower back weakness/pain and often waddle side...
  • deleted_user

    CMT Conference in Orlando

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    Last weekend my wife and I attended the CMT conference at the Holiday Inn in Orlando. this was my first time attending anything like this that was for CMT patients. The conference was wonderful, over 300 people were in attendance and the speakers were fantastic.We were able to get so many of our questions answered and no longer feel alone with this disease.I encourage everyone to join the CMTA...