Guest guest Posted February 27, 2000 Report Share Posted February 27, 2000 Hi Marc, I too was diagnosed with CMT when I was a kid. When I was in high school I could barely walk and by 2:30 pm I needed to sleep! I also had BAD balance problems and fell into things almost constantly. By the time I went to college I had figured out that in the a.m. I was fine, but by afternoon/night I was a mess, mess meaning balance problems, fatigue, tremors, etc. So alcohol and pot helped get me through that! (Some other pills from neuros too.) OK, long story short, something happened these last 20 years of my life, I am 47 now, so since age 27, I have not had any CMT progression, short of wearing in-shoe orthotic inserts in my shoes. Stopping the alcohol + pot helped I am sure, then finding a 'team' of good doctors + working together, changing my diet, etc. Just last summer the only complaint I had to my medical team was the 'electrical' type pain that would run through me at night from time to time and as you know, I started taking Neurontin for that. So that's about the extent of it. Basically progression-free and why I don't know. When I was young all I did was worry what my 30's and 40's would be like! And they have been great so far! I just wish I hadn't worried so much. Gretchen Quote Link to comment Share on other sites More sharing options...
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