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Old 08-27-2012, 11:39 AM #7
Susanne C. Susanne C. is offline
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Location: Mid-Atlantic coast
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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 mslincolnaol View Post
I have the hereditary too - do your hands suffer? I'm 61 and wondering how progressive this stuff is - probably had undiagnosed symptoms since I was mid-thirties, not diagnosed till 06. Gabapentin has made all the difference for me, can tell if I miss a dose (feet, yes, but attitude too... goes down hill, catch myself feeling sorry for myself, etc.) While there are cognitive effects of the gaba, I'll take them for the pain mgt, gains
mslincolnaol
I can only tell you my experience, which is based on CMT type 2, primarily axonal, small and large fiber sensory- motor neuropathy. I was clumsy as a child and unable to run, easily tired, but not in pain. In my 30's I started to develop numbness in my toes, and leg pain which I attributed to varicose veins. I did have a laminectomy at 38 to remove bone chips from the sciatic nerve. I ignored the numbness until it passed my ankles a few years ago. I developed a severe infection in my foot which went unnoticed because I felt nothing. The podiatrist insisted that I see a neurologist immediately as it was obvious I had a severe neuropathic condition. The surgery to clean the wound was done without anaethesia, my feet and legs are that insensate.
My reason for not mentioning the numbness to my PCP was fear of diabetes, the only thing I knew of that caused neuropathy. Of course I know better now! My family history is murky because of adultery, but the CMT is there on my birth father's side.
It is progressive. I am now fifty. The numbness has passed my knees and i get pins and needles in my thighs. My skin biopsy showed deterioration even at upper thigh. I walk with a hiking pole, two if outdoors. I still enjoy walking, but only on fairly level ground, hills and steps are difficult to impossible. The pain in my legs usually requires oxycodone 7.5 if I have to function, along with the gabapentin. This is a relatively low dose from what I have read, so I am fortunate.
About the hands. I am a very accomplished needle woman and seamstress. I make lace, quilts, heirloom projects of all types. I used to consider myself a professional fiber artist. In the past few years my hands have become so clumsy that projects take much longer to finish, so that I lose interest. Also, my hands claw up from holding a needle or crochet hook for any length of time. I recently knitted a lace christening gown for my first grandchild. It took six months, a few years ago it would have taken two at most. A few days ago I noticed a tremor in my right index finger. My toes do this often, the muscles are quite deteriorated, but this is the first time I saw my hand do it, and I am scared.
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