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Old 03-25-2013, 05:10 PM
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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I have held back from this discussion because what I have to say is not very encouraging, but it is based on experience. I have CMT, hereditary neuropathy, primarily axonal. The muscles in both feet, ankles, and lower legs are visibly atrophied, but it is more noticeable on the left. I am unable to move my two middle toes at all, and have limited range of motion in my other toes, feet and ankles. It is progressive. It is always progressive, though no one can predict the rate of progression. I am 51. It started with clumsiness and walking funny as a child, numbness in my toes in my 30's, and has progressed to numbness above the knees with complete sensory loss, balance affect, and muscle weakness.

If you have visible muscle atrophy, I would think that this is your most likely cause. You cannot regain lost muscle due to this disease. The best that you can do is exercise as tolerated to strengthen other muscles to delay further disability. I walk every day possible, often for miles, but on mostly level ground. Even slight inclines are exhausting and dangerous due to weakness. I use two hiking poles when outside. I enjoy it, but it leaves me too tired to do much else.

A skin biopsy showed severe small fiber neuropathy. My EMG/ NCS showed large fiber neuropathy with muscle loss. I have a fair amount of pain which is controlled with medication.
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"Thanks for this!" says:
Kitt (03-25-2013), v5118lKftfk (06-02-2014)