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Old 05-01-2013, 08:46 AM #8
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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My diagnosis is of hereditary neuropathy CMT type 2. My family history was incomplete, but I do have a half sister who wore leg braces as a child. It is a muscular dystrophy classed disease, but it is actually a muscular atrophy. As the nerves die the muscles do too, starting from the toes and fingers upwards. Mine has reached past my knees as far as numbness, with weakness in my arms and legs. I am unable to move my toes or the front of my feet at all.
This is untreatable and progressive.
My 28 year old son has it, and his symptoms are worse than mine were at hs age. It varies a lot even within families.
I have a complete loss of sensation in my legs, reduced sensitivity in my fingers, weakness (I walk with a hiking pole, two if outdoors) and constant pain in my legs and arms. It feels like it is coming fom the bones but neuropathic pain is tricky and hard to define. I am on time release morphine and Percocet as needed for breakthrough pain. Neither is a large dose and I am far fom pain-free but I am able to function, rather than lying on the sofa all day feeling sorry for myself, which is all I would manage to do.
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