Guest guest Posted December 31, 2004 Report Share Posted December 31, 2004 Jan, CMT is not muscular dystrophy as I understand it but it is listed under MD because the muscles are affected by the nerves that are not conducting messages to the muscles. Somewhere in Pa there must be a MDA clinic. I will see if I can locate one and will get back to you next week. MDA does research on more than 40 different types of MD and this includes CMT. They have Drs who do know what they are talking about. If you register with MDA they will pay for your dr visits at the clinic and often will pay for equipment that may be needed and some therapy. They will send you a magazine " Quest " that has articles about the various types and info on research being done. They also sponsor support groups which can be helpful with speakers and just meeting other people who know firsthand what you are feeling. I would suggest checking the phone book for Muscular Dystrophy Association, if you don't find anything, check with a local hospital or possibly on the computer. I have had 2 internists who both refer to this as MS and going into remission........as far as I know CMT doesn't go into remission and it is not as bad as MS thank goodness.It can be limiting and some people have pain with it but as far as I know you don't die from it. It's been referred to as a disease of inconvenience...you feel like you can do anything but when you get into it you find out you can't...........or as I think you can do almost amything, you just have to find a new way to do it. I'll see what I can find and get back to you.I've had CMT since I was 7 but only was told when I was 45, so I've been one of " Jerry's () kids for over 29 years. Sue Quote Link to comment Share on other sites More sharing options...
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