Guest guest Posted March 20, 2005 Report Share Posted March 20, 2005 Sue - I too hang my hands off the side of bed and have to " shake them awake " - They constantly " fall asleep " and tingle so bad at night. And the pain is worse at night also. The pain is in the thumb joints and the joint connecting index fingers. Others not too bad. Don't know if CMT related or maybe carpal tunnel???? One of these days have to find out. June Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2005 Report Share Posted March 21, 2005 June- My pain starting in my wrist so I thought it was carpal tunnel to, then it went to my hands, my pain is in my hands and fingers, the tips of my fingers get real red and my hands swell.The other day they hurt if I picked a blanket up. Anyway I see the neurologist in may so I hope to find out then. I will let you know. Thanks and have a good day. Sue Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2005 Report Share Posted March 21, 2005 Last week I had a visit with my neurologist. Before I could complain again about my hands he sent me in to have another EMG in my hands and arms. He said there are now studies that show that CMTers have a higher rate of carpal tunnel without having the usual repetitive use involved in non CMTers. In other words we can get carpal tunnel it just doesn't always have the same symptoms other people have. I show definite signs in both hands but in his words " your left hand is shot. " This amazed me since I am right handed. So now on to a orthpopedic to see if surgery will help or if I am to far gone. Fortunately my neurologist works with the University of Tennesee learning hopsitals so since I have no insurance the orthopedists will see me free and if I need surgery that will be free too. Cathleen in Arkansas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2005 Report Share Posted March 21, 2005 June and Sue - I have CMT and also had carpal tunnel. I experienced the same thing with my hand at night until I had surgery to correct the carpal tunnel - now I do not, so I am betting it is carpal tunnel causing this. Deb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2005 Report Share Posted March 23, 2005 Deb, I saw my neurogolist when this started about a year ago, the pain started in my wrist, he told me it was my CMT that was causing the pain and surgery would not help. But now the pain has moved up in my hands and got alot worse so I have a appointment to see him in May. Thanks for the information, I thought it was carpal tunnel also, and it might be. If he doesn't run any test this time I will be finding a new doctor. I can't stand this pain much longer. Thanks and have a nice day. Sue Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2005 Report Share Posted March 23, 2005 Cathleen, You are lucky to have good doctors, I live in Kentucky and I can not find any doctor that knows much about CMT, I would be about willing to travel just to find a doctor that seems to be just willing to learn about this disease. Most of them will say I have heard of CMT but don't know anything about it and i will have to explain what I know. But anyway I go in may to see my neurologist in May, this is the second time over my hands so I hope he will at least run a test on them. My pain started in my wrist so I thought it was carpal tunnel too and it might be. He told me that surgery would not help me, the last time a nerve test was done on my hands it was not good at all and did not even register on the machine when I had it done on my feet. I hope your hands are not to bad for surgery. Please keep me informed. Thanks and Have a nice day! Sue Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2005 Report Share Posted March 23, 2005 Sue, I know - the pain from the carpal tunnel was the worst pain ever - I could not sleep or do anything at all. Though it is always horrible to have surgery, etc. I have to tell you that I am so glad I did. Of course I still have some numbness and loss of strength from the CMT, but the pain is totally gone! Also, after the surgery I went to occupational therapy which was very helpful and I did regain some strength and mobility. Best of luck! Deb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2005 Report Share Posted March 28, 2005 Deb, I hate to have another surgery but if it takes away this pain I will do what I have to do. I am hope to find out something soon. Thanks for the information. You all are great! Sue Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2005 Report Share Posted April 15, 2005 Cathlene, That information regarding your left hand being the worst one and you being right handed is interesting as that is the same problem that I had. I had the operation for carpel tunnel about a year ago and had to have my left hand done first because that was the worst one. The EMG is the way we showed that I had carpel tunnel instead of CMT in my hands. Very interesting. Sharon __________________________________________________ Quote Link to comment Share on other sites More sharing options...
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