Hello everyone,

I Have been dealing with weakness in my feet, and lower legs for about two years now, one day at work I found it impossible to keep my balance without stumbling around. Several people have commented on my gait which lead me to feel extremely self conscious, finally I went to my primary care doctor who referred me to a neurologist. I had nerve conduction studies performed in my lower legs that turned out pretty poor, MRI came back negative on anything in my back, and hands and arms are in great shape yet. I just found out about this earlier this year. I have worked as an electrician for 13 years now, my duties keep me on my feet most of the day, including ladders, lifting, and other activities that are getting harder. I am in my early 30's and scared to death about the future.. I have not yet had genetic testing, and there is nobody in my family with the same symptoms.
What should I expect? How bad will this get?

Welcome Wisconsinner.


If indeed you have CMT no one not even a doctor can predict how bad you will get. DNA blood testing is very expensive. http://athenadiagnostics.com/ does it. There is a number you can call for more information.

Even though no one in your family has any symptoms that does not mean that they do not have CMT. Symptoms of CMT can be evident when you are old, young, or inbetween. Or symptoms might never be that evident. Or people can be misdiagnosed with something else. It happens still today. Symptoms vary greatly even within the same family. There are many, many types of CMT as well.

Hopefully, you will find an answer.

As Kitt said, no one can tell you how bad this is going to get, but if it is CMT and you are affected to this degree now, it could continue to progress to the point where you have trouble with your work. It may also level off for quite a while.

There are a lot of possibilities from where you are now and absolutely no way to know which one of them will come true. I have CMT, and I have two sons with symptoms, one 28 and one 30. The younger one is a casino dealer, a job that requires long hours of standing and a lot of manual dexterity. He has pain and numbness in his feet and some numbness in his hands with a slight loss of feeling. He is afraid of dropping things in the future and being unable to continue but is hoping to get promoted into management before then.

The older one is a teacher in China. He was an accomplished pianist but can only play for a short amount of time before his hands go numb, and he has trouble walking. He is trying to find a career to train for which would accommodate his increasing disability and allow him to return to the US. Both of them have college degrees, one in Russian, the other in business and technical writing, but these are not terribly practical, and the recession did not help.

CMT usually progresses slowly. Stay away from statins and certain antibiotics, especially Cipro or Levaquin and related types. They can really speed up deterioration. If you have trouble with your feet and legs get evaluated by a podiatrist for braces, they may help you a lot. Common sense taking care of yourself, getting enough rest, eating well, exercising but not to the point of exhaustion, all can help. CMT is a progressive disease no matter what, so you may want to look down the road at any related field that you could move into as you get older. Could you teach in a trade school? Go into business for yourself eventually and hire a young guy to do the crawling and climbing?

Just try to learn all that you can about this disease, and be aware that the Internet is rife with contradictory and incorrect information. It can be both better and worse than whatever you read about CMT. I have severe pain and can't stand for long or handle many steps but I can walk on level ground all day.

There is nothing harder to see on this forum than young people like yourself whose lives are rearranged by neuropathy, successful careers, parents of young children, but life has much harder darts it can throw than CMT. It is challenging but don't throw yourself off the cliff yet!

I thank you both for the reply! I realize that no two cases are completely the same, and I cannot see into the future to see how this will progress . I just wanted to reach out and have a few people like yourselves weigh in and describe your experiences

Thanks!

Like yours, my symptoms are in my feet and lower legs too. No pain , mainly weakness and balance/walking problems. I have AFO's which help tremendously!!! They make a world of difference in walking and help with balance. My diagnosis is "atypical cidp" basically because nothing else could be found and it is hard to get treatment without a diagnosis.
It definitely is no walk in the park, and I wouldn't wish it on anybody--but on the good note, I have not progressed in several years---the weakness is only in my lower legs and feet. So this could be the case for you too. Sounds like you have dealt with it this way for a few years?
I strongly encourage you to look into some lightweight carbon AFO's, they might be all you need at this time to continue with the work you are currently doing. They also help a lot with the fatigue, when the damaged nerves were being pushed too hard I would get tired quickly, this doesn't happen with the afo's supporting the damaged areas.