Guest guest Posted September 24, 2001 Report Share Posted September 24, 2001 Hi there, CMT is Hereditary Sensory & Motor Neuropathy a.k.a. Peroneal Muscular Atrophy. The nerves will not stimulate the muscles, so the muscles become weaker and weaker until they just shrivel up and don't work at all. So basically from the knees down and from the elbows down you lose all muscle. Its progressive and everyone with this disease has different levels of it-mild to severe in same generation. My mother, 2 aunts, sister and 1 nephew also have it. My feet, ankles are in constant pain with numbness, tingling etc. It's moving up the legs and I thought it was peripheral neuropathy,as symptoms are same. But unfortunately, its the old family curse! So far the Neurontin is doing pretty good, but they started me on just one pill before bedtime. In 2 weeks I will be on 3 pills a day-totalling 900mg. Rheumy told me that if this drug doesn't work, he will probably prescribe an anti-depressant. My aunt who has been in leg braces for 5 years is on anti-depressants and she is doing better with pain. Last night I sent an E-mail to " Ask an expert " at the Muscular Dystrophy web sight (they deal with CMT) and asked this question. Did my having RP, make the progression of the CMT speed up? I am curious to know because the problems with it have only become apparent recently. Was it just a fluke, that I got Dxed with 2 lousey things within 3 months? I'll let the group know if I get a response. Thanks to all with info on Neurotonin. Midge Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2001 Report Share Posted September 24, 2001 Hi there, CMT is Hereditary Sensory & Motor Neuropathy a.k.a. Peroneal Muscular Atrophy. The nerves will not stimulate the muscles, so the muscles become weaker and weaker until they just shrivel up and don't work at all. So basically from the knees down and from the elbows down you lose all muscle. Its progressive and everyone with this disease has different levels of it-mild to severe in same generation. My mother, 2 aunts, sister and 1 nephew also have it. My feet, ankles are in constant pain with numbness, tingling etc. It's moving up the legs and I thought it was peripheral neuropathy,as symptoms are same. But unfortunately, its the old family curse! So far the Neurontin is doing pretty good, but they started me on just one pill before bedtime. In 2 weeks I will be on 3 pills a day-totalling 900mg. Rheumy told me that if this drug doesn't work, he will probably prescribe an anti-depressant. My aunt who has been in leg braces for 5 years is on anti-depressants and she is doing better with pain. Last night I sent an E-mail to " Ask an expert " at the Muscular Dystrophy web sight (they deal with CMT) and asked this question. Did my having RP, make the progression of the CMT speed up? I am curious to know because the problems with it have only become apparent recently. Was it just a fluke, that I got Dxed with 2 lousey things within 3 months? I'll let the group know if I get a response. Thanks to all with info on Neurotonin. Midge Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2001 Report Share Posted September 24, 2001 In a message dated 9/24/01 8:30:12 AM Pacific Daylight Time, midgeirish@... writes: << I am curious to know because the problems with it have only become apparent recently. Was it just a fluke, that I got Dxed with 2 lousey things within 3 months? I'll let the group know if I get a response. Thanks to all with info on Neurotonin. >> Midge, thanks for all the invormation on CMT...I hope the neurontin kicks in and your start feeling good again and pain free... Please let us know what you hear back... I am curious to know to.. hugs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2001 Report Share Posted September 24, 2001 In a message dated 9/24/01 8:30:12 AM Pacific Daylight Time, midgeirish@... writes: << I am curious to know because the problems with it have only become apparent recently. Was it just a fluke, that I got Dxed with 2 lousey things within 3 months? I'll let the group know if I get a response. Thanks to all with info on Neurotonin. >> Midge, thanks for all the invormation on CMT...I hope the neurontin kicks in and your start feeling good again and pain free... Please let us know what you hear back... I am curious to know to.. hugs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2001 Report Share Posted September 24, 2001 Dear Midge, I don't have much feeling in the last three fingers of my left hand. I didn't know what it was but thanks to you I now know. I thought I hadn't a pinched nerve or something in my elbow. I also notice my feet are shriveling up. Gad I went from major swelling of my feet to now they are shrinking. Bones stick out everywhere. Thank you so much for the information....Sue Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2001 Report Share Posted September 24, 2001 Dear Midge, I don't have much feeling in the last three fingers of my left hand. I didn't know what it was but thanks to you I now know. I thought I hadn't a pinched nerve or something in my elbow. I also notice my feet are shriveling up. Gad I went from major swelling of my feet to now they are shrinking. Bones stick out everywhere. Thank you so much for the information....Sue Quote Link to comment Share on other sites More sharing options...
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