Guest guest Posted May 10, 2000 Report Share Posted May 10, 2000 In a message dated 5/10/00 1:22:30 PM, wolfhybrid2000@... writes: << How are some of your pains associated with the disease? >> I have nerve pain from my CMT nerves that are dying. 50% of CMTers have nerve pain, and 50% of CMTers don't. Some, like me, are numb to the touch but have lots of pain inside the feet/legs, and/or hands/arms. Some of the pains I have include: firecrackers under my skin electric shocks electric jolts bee sting feeling wrenching spasms painfully frozen feet (but warm to the touch) These shocks, spasms and so forth are going on 24 hour a day. Ten years ago I had burning feet. Then they were frozen on the inside and burning on the outside for a couple of years. Now they are just freezing for the last few years. Until 10 years ago I rarely had any pain of any sort. All this pain is associated with my CMT. I hope that is what you meant in your question. Kat Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2000 Report Share Posted May 10, 2000 In a message dated 5/10/2000 3:22:26 PM US Eastern Standard Time, wolfhybrid2000@... writes: << wolfhybrid2 >> I have several different tpes of pain. crazy bone type, achy muscles, like from a high fever, cramping muscles. Nothing has ever helped. Mayo Clinic put me on Tegretol for the crazy bone type pain. The cure was worse than the pain.....lol None of it, is a pain that I can't live with. from Indy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2000 Report Share Posted May 11, 2000 I, too, have loss of feeling. But I am also in pain 24 hours a day. The doctors can poke me with their pins and I don't feel a thing but if I walk across the foor it hurts. I have muscle spasms and my ankles pop, my wrists pop andmy hips at times feel like they are going to just break in half. It is hard to explain to doctors that you are numb but you hurt. To look at me you wouldn't think that tere is anything wrong, except I walk and stand funny. I don't think my husband really thought that there was anything wrong until I made him go and watch my last EMG and they put those needles in and and I didn't even know. For years I have had symtoms and no pain, it has just been in the past 2 years that I have had real pain and it isn't getting any better just a slow progression of worsening. My mom is in her 50's and is just starting to show signs she has hurting feet butnot the back, hip,leg and hand pain that I have had. So it is different in everyone even in the same family. Danieta Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2000 Report Share Posted May 11, 2000 I know what you are going thru with the pains and no feeling from the pin pricks. I had that in 1990 when I went to an orthopedic Doctor and he worked with me from January till about August and kept telling me well he found nothing, he then sent me to a Rumatoid-artitis specialist who checkedme over and said well you need to go to the Neurologist. The Neurologist diagnosed my CMT right away from the way I walked, but he ordered a MRI to determine if I had a pinched nerve that was causing all the other pain. I had some ruptured disk which was pinching the nerves, after a surgery in which they did fusion I was able to get back to work and did ok until the progression of my CMT was causing trouble walking to the work area, it was then that I ask for closer parking and since this could not be arranged I was placed on permanent disability from my employer. Make sure your Dr. checks for pinched nerves if you are having all the spasms. I will have another surgery Friday due to another pinched nerves,ruptured disks and a cyst . Make sure you use a good neuro-surgeon also. Hope you find the cause of your spasms. Doris -----Original Message----- From: Danieta <rdanietafost@...> egroups <egroups> Date: Wednesday, May 10, 2000 5:02 PM Subject: [] Re: Feeling Loss I, too, have loss of feeling. But I am also in pain 24 hours a day. The doctors can poke me with their pins and I don't feel a thing but if I walk across the foor it hurts. I have muscle spasms and my ankles pop, my wrists pop andmy hips at times feel like they are going to just break in half. It is hard to explain to doctors that you are numb but you hurt. To look at me you wouldn't think that tere is anything wrong, except I walk and stand funny. I don't think my husband really thought that there was anything wrong until I made him go and watch my last EMG and they put those needles in and and I didn't even know. For years I have had symtoms and no pain, it has just been in the past 2 years that I have had real pain and it isn't getting any better just a slow progression of worsening. My mom is in her 50's and is just starting to show signs she has hurting feet butnot the back, hip,leg and hand pain that I have had. So it is different in everyone even in the same family. Danieta ---------------------------------------------------------------------------- ---------------------------------------------------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2000 Report Share Posted May 18, 2000 In a message dated 5/10/00 1:22:25 PM Pacific Daylight Time, wolfhybrid2000@... writes: << How are some of your pains associated with the disease? >> *************************** Kathy, Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.