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Topic: cmt helpers

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Subject: cmt helpers
Date Posted: 1/2/2010 10:52 PM ET
Member Since: 1/8/2009
Posts: 780
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does anyone else have charcot-marie-tooth disease it affects the nerves and muscles in the hands legs feet and arms?  my oldest DD has this and the drs say she was born with it as it is heriditary. but no one in our family has anything like it. she is 41 now and i take care of her on a daily basis, also have to help her do things we take for granted. she is wheelchair bound and cannot stand or walk. just wondering if any one else has this. she was diagnosed at the age of 2 at childrens hospital in chicago.  has been to mayo's clinic in minn and also went to hospital in chicago from the shriners foundation. but she is set in her ways so no amount of operations will help her , it also affects her breathing and she has asthma on top of it, we have a time trying to keep her feet warm as she has bad circulation and gets cold real easy.

Subject: CMT helpers
Date Posted: 10/1/2010 4:17 PM ET
Member Since: 10/1/2010
Posts: 1
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My husband has CMT, and like your DD there was no family record of it - he began tracing his family history just to see if there was any mention.† However, we believe his was a spontaneous mutation since his mother was on quite a lot of prescription drugs before he was born.† He is also wheelchair bound, so I understand what you're going through.† My husband doesn't have breathing problems but he also has the cold feet - one thing we recently discovered is using a blow dryer to heat his socks just before he puts them on.† I bunch the sock up so the toe heats for 5 seconds, then gradually let the sock out at five second intervals.† It really does seem to help!

Date Posted: 10/6/2010 10:01 AM ET
Member Since: 1/8/2009
Posts: 780
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My DD dr told us she is a mutant† because she is the only one in family that has this. I thought i was the one that was cause of it because i have Rh- blood, but dr said no she is just a mutant.