Progression of CMT in hand

What is the length of time it takes to lose use of your hands approximately? What were the signs done of you experienced? N

Some of you experienced… Darn autocorrect! My left thumb has been shaking for years, and I have trouble using it. But lately my pinky and ring finger of that same hand have violent constant twitching and I am noticing my hand is drawing up a bit. Just wondering how long I may have. Also, anything I can do to help slow it? Thanks

CMT1X started taking hand function in early twenties. At 45 I struggle with many smll things like twist ties, buttons, sippers, etc. Keep a folding pair of needle nose pliers and hemostats handy. Put key rings on my zippers. My wife helps often and I am not shy, I will ask a stranger if I need help. Learning new unusual ways to do things like using left & right index fingers to turn screws has helped me regain a lil function here & there. Eat right, exercise smart, and try not to let stress get you. Same as for everyone but way more critical for us. Peace.

Actually they make braces for you to sleep in. That’s when you will make a fist more. I personally did not like them. They were restricting to me. But they may just be the thing that will help you. The biggest problem I have is when I have to get new leg braces! I hate it takes a lot of adjusting. I need new ones now but ugh it’s hard for them to get them exactly right. Wearing a pair not fitted properly is next to impossible they hurt!!

Well of course I am not an expert,but I do have 34 years experience. Mostly it depends on how much you use your dad had very large arms very strong! He was forced into early retirement because along with the CMTs he also had ulsurated colitis. He was constantly developing hernias to the point they could not be repaired anymore. He also had a lot of heart problems. Back on track it took him approximately a little over a year till they waisted away. My hands are useless as far as opening things or trying to hold anything heavy. So in closing use it or loose it and if its already lost then there’s nothing you can do about it now.

Thanks for the info…

You are welcome! Are you fellow CMT patient or just know someone effected by it?

I have CMT. I am 42 was diagnosed at 5 years old. Until now, my feet and legs have been mainly affected. My hands and arms have started progressing in the past year or so.