Cmt
 

Does anyone with CMT on this site still work? Does the physical Therapy help?
Can you drive again with leg braces? Recently diagnosed and devastated!! Life will go on, and I will fight for my quality of life. It could have been worse!

If you are working now without too much difficulty you can probably continue for a long time. A lot depends on what type of work you do and how far you have to drive. Are you definitely getting AFO's? I do not have them yet, I am getting some type of brace, not those exactly, not sure yet about driving but my doctors are horrified that I drive as it is, but I only go in about a four mile radius, no highways. My reflexes are too slow for that.
I was a stay at home mom, taught English for a year three years ago, did fine but wasn't on much medication then. It really tired me out and could get very painful. The cold was the worst of it. I am 53 and this condition has slowly worsened throughout my life.
What type do you have, if they didn't give you a type is it myelin or axons? What are your symptoms now? It moves slowly but in my experience there can be big drop offs then a leveling off.
Physical therapy has helped with with the big drops- loss of strength in hands due to a flare up, arthritis in the spine, sprained ankle, etc. it is generally not considered to be very helpful in the long run for muscle atrophy which is inevitable, but I think it can delay things a bit. I have never regained normal function from it, but I have improved a little. It is important to have a therapist who understands even a little about CMT and doesn't push too hard or too long. Mine knows when to quit, and it isn't when they normally would. I stop regaining strength much sooner than without CMT.
You are right, it could be worse.

I have AFO's and I drive with no problem. I do not do physical therapy. If you do be certain that they know something about CMT or it could hurt you. As far as gaining strength, that would be the good muscles you still have not the atrophied dead muscles you have which you can do nothing about. There is a fine line as to how much you can exercise, etc. CMT progresses no matter what you do.

Sorry to hear. How did they come up with that diagnosis? I thought all of your symptoms started right after a dental procedure.

I am curious as to how CMT was diagnosed as well. Also, is there any family history, your symptoms, etc. Thank you.

I have been dealing with symptoms for years. Being born into poverty did not help. I rarely went to the dr. As for family history, who the heck knows! I know my immediate family. My great grandmother may have had it, but being poor, she only had special shoes. She died when I was 8 yrs old. I have little faith in doctors because of misdiagnosis through the years. I have kept active through the years with weight training. I could not run. I have been to podiatrists and physicians that had not ever put 2 and 2 together. The onset of the neuropathy in midlife has been a nightmare. It has been midwrist through my fingers and midcalf through my toes since December. I have not been able to drive or work since Dec. CMT has many faces and the testing is very expensive. My current neurologist stated that since there is no cure, additional testing is not necessary. I am currently talking with the insurance company and the Mayo clinic in Rochester pleading my case. I will be the first documented case in my family (that I know of). The nerve and muscle biopsies revealed large axon loss with scwann cells increased. The mayo clinic performed the testing. There is much more, but the end result is that I have to live with this for the entirety of my life. I am just coming to terms and adjusting to the facts.

I have leveled off in a debilitating state. My hammer toes have no feeling and are curling more and more. I am numb to midcalf. Cold as ice until I have an episode of swelling and fire. That happens about once every 2 weeks. Still trying to figure out what triggers it. My hands are always numb and tingling. I exercise them at least 2 hrs a day using large metal balls and stress balls (the metal balls cause pain, stress ball.. not so much). I have no fine motor skills at this time. I have demyelinating as well as axonal. I am just beginning physical therapy. I have been doing low impact yoga to my ability.

I suspected CMT from the beginning. Neurologists dislike you having an opinion. I have had symptoms since birth. Poverty kept me from getting treated for my feet. I suspect that my great grandmother had CMT. She wore special shoes and walked with a cane. She was unable to stand or walk without her cane. Poverty! Podiatrists and doctors never put 2 and 2 together. My severe neuropathy occurred midlife. I was an active weight lifter for many years. I am sure that helped. The neurologist that I seen this week mentioned CMT, all of my tests point in that direction. There is one final report to come from Mayo. Since there is no cure, he has decided to treat it with meds and physical therapy. That is all you can do. I start physical therapy tomorrow. I am pleading my case to the insurance company, Mayo, and my new neurologist. The testing is very expensive. I cannot work and have little resources at this time. It is what it is. I will work hard to maintain my quality of life. My goal is to be able to drive and return to work! I have 7 months to get there. Pray for me

I was also unable to run as a child, and not taken to doctors. My case was complicated by the fact that my parents were both married to other people and the CMT is in my birth father's family, so no one wanted that to come out. My half sister had leg braces from childhood.
I was evaluated at Johns Hopkins and told much the same thing, no treatment no point in further testing. Mine is axonal but eventually it all goes. Our symptoms are similar, although I also have very sharp pains in my legs and have for years for which I take pain medication. Stairs are very difficult. The numbness for me has progressed to hip level, I cannot feel temperature at all and sensation is reduced. My hands burn now and the last two fingers on each hand are numb. It had progressed quite a bit in the last few years.
Do you have children? I have two sons with symptoms, 28 and 30. One has numb feet, the other has numb hands and weak ankles.

My son has degenerating disc disease and is having hip problems at this time. I am praying that this skips generations. I worry about my grandchildren. Stairs are difficult for me, as well. My treadmill is downstairs. After walking, I can barely make it up. I am trying my best to manage my atrophy. Time will tell. I am wondering if I should start SS disability now or after therapy. I truly want to return to work. I am not ready to retire. This does not sound promising

CMT does not skip generations. Symptoms can be evident when you are young, old, or inbetween. Or they might never be that evident but the person still carries it and can pass it on. You can have high arches, flat feet or normal feet. Some have hammertoes but so do people in the general public. The same type of CMT is what is in your family even though everyone may have different symptoms. My feet and legs are affected and my feet look normal. I do not have numb legs or feet. They are different in feeling but not numb. My hands are not affected. Sometime perhaps they will be. In my family and back both feet/legs and hands were/are affected. Symptoms are just different for each one.

There are over 70 types of CMT identified so far and the number is growing. However, people I know with CMT have some of the most common types. There are also many subtypes of it.

CMT symptoms vary greatly even within the same family. I find this to be true. I did anything and everything before slight symptoms became slightly evident when I was in my early 50's. I knew it was CMT though. But CMT progresses no matter what you do and it surely does. I can tell that right now. But it took a long time for me and I am fortunate for that. However, it does not make it any easier. It is a bitter pill to swallow IMHO. I know there are worse things but I'm dealing with this. Other people are dealing with whatever they may have.

Different types of CMT seem to progress faster than others. That happened to a friend of mine. She started with casted AFO's and was doing okay for a time. Then she had to use a cane with them. She fell and ended up using a rollator with them. And a short while later she ended up in a wheelchair. Just sharing that to show that certain types progress much faster than other types of CMT.

I just got new AFO's and I can tell that I'm not as good as I was four years ago when I first got them. There are many, many types of AFO's as well. I have the least supportive. I use a cane and an arm when out. My balance is pretty well shot. In the house I walk using countertops, walls, door frames, etc. Lots of us do that I have found.

I wish all of us CMTers well.

The director of the lab where I am employed want me to go to Mayo in Rochester. She even said she would pay for my trip. What do you think?

It really is whatever would give you the greater peace of mind. There probably isn't anything they can do as we are told it is progressive and incurable. Johns Hopkins would be preferable to Mayo in my opinion, just from what I have read here and heard from neurologists, if you really want to pursue it, but in any case don't expect too much.

That sounds like it is worth a try. Dr. Peter Dyke, Professor of Neurology would be the one to see. He specializes in many diseases including CMT.

http://www.mayoclinic.org/biographie...d/bio-20053356

I have heard good things about him. The Mayo Clinic in Rochester, MN is also recognized as one of the top for high quality patient care more often than any other acedemic medical center in the nation. I wish you well.

Mayo Clinic is also located in many other states but I am refering to the one in Rochester, MN as you are.