Guest guest Posted August 29, 2002 Report Share Posted August 29, 2002 Hi , I'm 39 and have the same upper leg weakness that you do. I started noticing it about a year ago; mostly on my right side. It's difficult to walk for more than just a short distance. I was diagnosed with CMT 1X in 1990. Most of the people that I've met with CMT during the past 12 years have had upper leg involvement. A few have even been in full leg braces. When I was diagnosed with CMT the doctor told me that the disease would be limited to my lower legs. I then began to meet people, younger than me, with upper leg weakness. This didn't really surprise me since the nerves in the lower and upper legs are not different, except for length. I was just fitted for a KAFO (an AFO with an upper part for lateral knee support). I was having knee pain due to muscle weakness on one side. My doctor said to use this when walking long distances so I didn't mess my knee up. It was $3000.00, but my insurance company picked up 90%. I've only worn it a few times, but it really helps stabilize my knee and conserve some energy. Greg Quote Link to comment Share on other sites More sharing options...
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