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* my walk with CMT

February 4, 2016

“No cure or even treatment possible.” This didn’t sound very hopeful. It was regarding CMT, which stands for Charcot-Marie-Tooth which are the last names of the 3 people credited AFO4for its discovery. It’s a form of neuropothy that affects (as in kills) one’s longest “peripheral” nerves (as in not in your spinal cord) in your legs and arms. This also negatively affects your feet and hands. As this occurs the muscles atrophy. As this happens you lose your balance and ability to walk without braces and eventually surgery.

For some it starts early in life, with braces needed sometimes before a person starts school. For others, it progresses much more slowly. I’m very fortunately in the latter category. Which means while I was initially tentatively diagnosed as having it back in 1990, it has progressed slowly. Most of the time it’s genetic, though I have yet to find anyone on either side of my family with it. Unfortunately, at this point in time, anyway, there is no cure or even treatment. So it progresses.

In follow-up testing several years ago CMT was definitively shown to be present, with about 90% of my longest nerves no longer operational. Bummer! On the other hand, I’m still mobile (not needing my braces or cane for most of the time, icy spots excluded) and don’t need foot surgery–yet. And there’s always the hope that the medical world will find a response. Preferably sooner than later. In the meantime we carry on.

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