Charcot-Marie-Tooth patient
 

It started about 8 years ago with loss of sensation in my feet. Thought they'd gone asleep but it was reason enough to consult with my MD. I've always had high arches but I thought it was because my mother put me in correction shoes. Couldn't run worth a hoot so I didn't make the Track team.
After neuropathy tests were conducted, I was diagnosed with CMT. Doctor told me it wasn't a killer just a crippler. Can't tell you how many times I fell and stumbled. I wear a ATF on my right ankle due to foot drop. I was watching a DVD tonight and was sliding my hand down my left calf muscle and about 85% of the lower part of my calf has wasted almost to the bone.
I try and go to the gym and ride a bike about 10 miles a couple times a week. Plus I walk in my work. Doctor says exercise may slow the progress of the disease.
My question is: "will I still be able to walk when the entire calf muscle is gone?".
I know the following sounds crazy but if the lower leg can't support my body anymore but the thigh muscles remain strong then removing the lower legs and fitting a prothesis(2) could bring back quality of life? Or is that a little far fetched?:wink:

Welcome to NeuroTalk:

We have a thread at PN on this:
http://neurotalk.psychcentral.com/thread121564.html

and on the main forum you can find threads using the search function...use Charcot as a search term. (CMT is too short for the search to work).

This is the main PN forum:
http://neurotalk.psychcentral.com/thread121564.html
The search is in the upper right of the index page there.

I just found 78 threads, but I cannot link them for you because a search link expires when copied. So you have to do your own search, sorry.

Amputation an option?
 

Most people with CMT consider amputation after years of struggle with a limb or with an open wound that will not heal after many years of trying. Those I know of have done very well after amputation but everyone is different. One fellow, a doctor, had his foot amputated, and was back on the golf course using a prosthesis, in a matter of months. Exercise can help keep you keep in shape but it can also be detrimental to your CMT if you push it and overwork the muscles and especially the nerves that fire them. **