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Old 04-23-2015, 09:42 AM #11
Kitt Kitt is offline
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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.
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Last edited by Kitt; 04-23-2015 at 01:22 PM.
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Old 04-23-2015, 09:31 PM #12
Coriny Coriny is offline
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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?
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Old 04-24-2015, 07:24 AM #13
Susanne C. Susanne C. is offline
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Quote:
Originally Posted by Coriny View Post
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.
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Old 04-24-2015, 09:22 AM #14
Kitt Kitt is offline
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Quote:
Originally Posted by Coriny View Post
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?
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.
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