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Old 09-06-2014, 11:18 AM #7
mrsz mrsz is offline
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mrsz mrsz is offline
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Join Date: Sep 2014
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Quote:
Originally Posted by Susanne C. View Post
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.
Thank you Suzanne. I am now very curious about CMT and will ask my neurologist about it at my next appointment. I am in CT and purchased a pair if walking poles this winter for a trip to NYC. I had fallen the last time I was in the city.
Do you take ropinerole for your RLS? I feel like I am suddenly on so much medication.
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