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Old 09-06-2014, 08:43 AM
Susanne C. Susanne C. is offline
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Join Date: Jul 2011
Location: Mid-Atlantic coast
Posts: 721
10 yr Member
Susanne C. Susanne C. is offline
Member
 
Join Date: Jul 2011
Location: Mid-Atlantic coast
Posts: 721
10 yr Member
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Quote:
Originally Posted by mrsz View Post
This sounds like me. I am 55 but was also a clumsy kid. I was diagnosed 1 year ago with SFPN but my initial symptom was muscle weakness. Difficulty with any kind of incline. The restless legs have been there for years but very mild until the neuropathy symptoms kicked in. Feeling like I have socks on. Numbness,burning ,tingling in the feet and now legs. I also have significant joint pain in my knees, hips and low back. I struggle with any stairs. No family history that I know of.
I think that you should do a little research on CMT. The stairs are a real tip off, as are the childhood symptoms. Many people get a more mild expression of it, settling in so late that it seems like symptoms of aging so it may run in your family without having been obvious. My father drank heavily for the pain and had trouble getting out of chairs even in his 40's, but never said what it was, on the other hand my half-sister wore leg braces since childhood. Not having a family history doesn't rule it out.

I wasn't actually part of their family, so I had no idea until I was 47 and the podiatrist said he couldn't continue to treat me until I went to a neurologist- I had a serious staph infection in my foot with no feeling at all- he didn't even have to numb it to cut away the surrounding tissue.

Because of the specific muscles that atrophy with CMT, stairs are our nemesis. I keep clothes downstairs to limit my trips to once or twice per day, and I crawl up. Even slight hills are very difficult and painful. I still enjoy walking in he woods but it is very flat where we live on the east coast. I use two hiking poles. For stopping and starting destinations where there is any amount of standing like museums or airports we use a wheelchair.

It is progressive and there is no real treatment but there are things you can do to make life easier. I also have arthritis of the spine, hips, and knees, so completely understand.
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