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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Abellz 08/30/2017

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!

shadowwulf 03/16/2018

Welcome, I have CMT and am 50 this year. I had not known I had the disease for many years and worked hard physical labour until a couple years ago when i broke my ankle. I was allowed to work in the office until I healed up, only then did my symptoms get dramatically worse.

I would say build as much muscle as you can when you are young, because once those nerves are toast, your muscles atrophy and you lose flexibility.

do what you can within your restrictions, because things just get more difficult as you age.

I skied until 2 years ago, when the cold gave my feet and hands EXTREME pain. So I stopped, not due to muscle loss but pain issues that may or may not be 100% CMT, I also have raynauds as well, a very painful version that an uncle on my father side also experiences.

artsy_gurl 11/28/2018

Hello! I am recently new to a support group, too. I was diagnosed with CMT when I was 10 and am now 20. I can honestly answer your question by saying it depends on everyone's own individual body. Everyone who has CMT is effected differently. There different types, and some are more extensive than others. With this new diagnoses, you need to find out what works best with your body. I was told by my doctor that putting too much strain on the muscles can make pain worse and make the muscle deteriorate faster. So body building, is way out of the question for me. I have the rare type CMT and therefore it has effected my body in ways most doctors haven't seen from CMT. Over the years, I have had to figure out what I can and can't do in order to "preserve" my body, so to speak. I have never met someone with CMT and have always felt so alone. Seeing that there are other people out there with CMT really motivates me to work harder and be there for those struggling also. I would love to talk to you more and be here to help you out the best I can!

chihuahua 12/31/2018

Hallo I have CMT and find cmt.org (in America) a great help. It's a bigger country therefore more people have cmt and far more research and help is given to people with cmt.

AlM 05/04/2020

Ok I am new to this group and have never been tested for CMT as very expensive, but I have it CMT (both feet and hands -- first started in 2011 at age 57) symptoms. Weakness walking issues tingling all the time trouble with buttons and holding things.

Anyone try chiropractors vs. physical therapy?

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