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Anonymous

I have suffered from CMT my entire life. Like most it is rarely diagnosed during onset. Problem I found was I always thought I was different growing up since I went to doctors and no one knew what to look for. I walked fun, couldnt run or jump it was only until after college didI find someone to tell me what it was.

Problem the disorder has is its neurological, skeletal, muscular. So finding one doctor can be difficult. There is no cure for it. There is a list on the CMT site which lists things as "toxic". Which excel the disorder. CMT patients should stay far away from them. Such things as nitrous oxide from dentist is rated by severity on the list as well as everything else they find that can speed up the loss of abilities.

If you already had the genetic testing which will tell you what chromosome(s) are effected they will tell you what type of cmt your husband has. Like many said next step is a neurologist but they will just keep an eye on strength of muscles and hook you up to (emg?) the one where they send shocks thru your body to two points and measure how long it takes the nerve impulse. They really cant due much more then that and i have stopped going to mine.

There is no clear insight I can give you on what lays ahead for your husband. From what i understand its different for each patient. I do know they say its important to stay active to not lose muscle mass and try to keep the flexibility.

One of the tell tale signs of cmt is the gait in the arch and the curving in of the foot and the claw toes. I wear high top sneakers everywhere for ankle support. Boots are a good option but usually cmt patients have strength problems in the foot and trip on a line in the sidewalk so boots may prove to be too heavy and lead to falls. I went thru a foot fusion. I had 3 large screws into my heel trying to fuse the ankle in one place but that didnt work. If that is a route you may take just remember most cmt patients have been walking the same way with the disorder their entire lives and any change of that will cause stress on another part of the body. Foot fusions have been known to lead to knee and hip replacements. A less aggressive way is to get prosthetic you wear to support the ankle. I have worn ones that fit in the shoe and go up to the knee to ones that just go to the ankle.

I am sorry to hear about your husband. They have recently started really studying the disorder. For years it was never mainstream. They are now compiling a database since it is hereditary and the awareness is growing. It is life altering but not life ending. I do most of the stuff i did as a kid but now i just do it in moderation. Moderation is a key.

July 10, 2014 - 6:26pm

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