Guest guest Posted September 8, 2003 Report Share Posted September 8, 2003 Jedi, I was a bit older than 5 when diagnosed, but nothing much was known about CMT except in the orthopedist's manual of diseases. Nothing like how to deal with spascity, or tremors or falls, or balance problems, etc. Nothing even for my parents on how to prepare a child for surgery. And definitely no Mc's for pediatric hospital patients. I really feel for you, since for so long I had to live with CMT and symptoms and yet still go on with life; no American's with Disabilities Act then either. Sometimes I look back on my life and wonder how the h*** I did as well as I did, especially in high school when CMT seemed to be the worst for me. It wasn't until I was 35 that a young neurologist found a medication that really improved not only my symptoms but quality of life - the Elavil. I'm 51 and still take it and it still works. In the 1980's I started getting a CMT newsletter, then when PC's came around got on-line. It really wasn't until I started that I started learning about CMT. I think my greatest discovery has been we are all different sometimes in symptoms. But even in that difference, I started to 'relate' to the feelings people were sharing about having CMT. Bingo. This has been very healing for me. When you get a chance, you might want to go through our links section and look over some of the CMT sites. Here's a direct line /links I will get some others added later this month. Now there is a CMT Magazine that comes out every other month that I find to be a great source of information - if you want to get a copy email cmt.today@... And wow, then I met this doctor in Rome who wrote a book on CMT - and he has had CMT since childhood too. The book is at http://www.aicmt.org/books.htm And now there are about 6 or 7 other doctors in the U.S. who are CMT research specialists. So, we ARE making strides! And I have hope! Perhaps there is someone already here at that lives near you or within the same geographic area. When you're ready, just ask. ~ Gretchen Quote Link to comment Share on other sites More sharing options...
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