violaa
01-26-2005, 01:56 AM
i have md its called charcot marie tooth i was wonering if anyone that might read this that has md has trouble with there hands hurting nad going dumb like there waking up from being asleep :confused:
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michigani
02-03-2005, 09:02 PM
Violaa,
I don't have CMT, but I do have a muscular dysrophy that is a lot like Limb Girdle M.D. Only that's not quite what it is. I have a yet un-defined type of muscular dystrophy. So I understand what it's like to have a very rare illness. Out of 800 muscular dystrophy patients in my region, I am the ONLY one with my specific symptoms. I am having lots of genetic and DNA testing done. I have bad foot drop. I believe this is a symptom of CMT is it not? The rest of our symptoms may be different but in general we probably both feel very week and frustrated. Hang in there. It definitly helps to "talk" with others on this site who are going through the same similar situation.
Best Wishes,
Mark
I don't have CMT, but I do have a muscular dysrophy that is a lot like Limb Girdle M.D. Only that's not quite what it is. I have a yet un-defined type of muscular dystrophy. So I understand what it's like to have a very rare illness. Out of 800 muscular dystrophy patients in my region, I am the ONLY one with my specific symptoms. I am having lots of genetic and DNA testing done. I have bad foot drop. I believe this is a symptom of CMT is it not? The rest of our symptoms may be different but in general we probably both feel very week and frustrated. Hang in there. It definitly helps to "talk" with others on this site who are going through the same similar situation.
Best Wishes,
Mark
jcfw
06-14-2005, 01:42 PM
My mother-in-law suffers from CMT, and literally "lives" on painkillers. She suffers a great deal of pain and has to now wear surgical shoes. In spite of this, she makes sure that she goes out walking every day. Her brother has it too so I think that it may be a hereditary condition.
There seems to be nothing that doctors can do for her. Has anyone else discovered anything? (I wondered if there was an alternative remedy that might help.)
There is a very good description of this condition in the "Dr. Joseph F. Smith Medical Library" - this is the treatment that they recommend:-
"Physical and occupational therapy form an important part of CMT treatment. Physical therapy is used to preserve range of motion and minimize deformity caused by muscle shortening, or contracture. Braces are sometimes used to improve control of the lower extremities. Occupational therapy is used to design compensatory tools and techniques to aid in dressing, feeding, writing, and other activities of daily living.
Tremors may be worsened by caffeine, so reducing caffeine use may help minimize them. Beta-blockers may help relieve tremor. Alcohol should be avoided, as should certain drug combinations that can cause muscle damage. Such damage may result from combining gemfibrozil with lovastatin, for instance, both used to treat high cholesterol levels."
There is also a [ please follow the rules for posting websites ]
There seems to be nothing that doctors can do for her. Has anyone else discovered anything? (I wondered if there was an alternative remedy that might help.)
There is a very good description of this condition in the "Dr. Joseph F. Smith Medical Library" - this is the treatment that they recommend:-
"Physical and occupational therapy form an important part of CMT treatment. Physical therapy is used to preserve range of motion and minimize deformity caused by muscle shortening, or contracture. Braces are sometimes used to improve control of the lower extremities. Occupational therapy is used to design compensatory tools and techniques to aid in dressing, feeding, writing, and other activities of daily living.
Tremors may be worsened by caffeine, so reducing caffeine use may help minimize them. Beta-blockers may help relieve tremor. Alcohol should be avoided, as should certain drug combinations that can cause muscle damage. Such damage may result from combining gemfibrozil with lovastatin, for instance, both used to treat high cholesterol levels."
There is also a [ please follow the rules for posting websites ]