Guest guest Posted September 5, 2003 Report Share Posted September 5, 2003 Hi there Colleen! I was diagnosed with CMT1 15 years ago. I have been very fortunate and mostly suffer from fatigue,foot pain and I walk with a gait due to several severe ankle sprains. I do not wear AFO's and do not have many problems with my hands yet. My 15 year old son is not as lucky as I am, tho. He starts physical therapy on Sept. 18th as his ankles turn out severely and he has much trouble walking. No hand problems for him either, yet. He does have high arches and curled toes like me, but his walking is very poor. If you ever want to talk-please email me anytime!! Take care-Tammy in PA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2003 Report Share Posted September 6, 2003 Colleen, I was diagnosed long before " types " were known about CMT but I have experienced burning feet my whole life. I use icepacks on them, I also keep lotions in the fridge (very soothing) and recently I discovered Biofreeze, a gel/lotion that helps burning feet temporarily. Also my orthotics were wrapped in suede this time and I really feel my orthotist hit the mark on that as the suede stops so much burning (especially at wierd times, like in church, or the library when I can't take my shoes off) I had immense fatigue in high school, from there on I had to learn to focus on one thing and start learning to take breaks and pace myself. That has been a lifetime of learning, I'm 51 now, I think I've got it! Still sometimes after a hectic or especially stressful morning, I will take a nap for an hour and this really helps. Sort of gives me 2 days in one. ~ Gretchen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2003 Report Share Posted September 6, 2003 my Dr. thinks I have CMT 1 but no DNA tests to prove it. in OK Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2003 Report Share Posted September 7, 2003 dear colleen, I also have cmt 1, and i experience the very same problems that you write about. I feel like I suffer alone, because I look healthy and people dont understand the problems i experience. Fatigue is a big one, it makes working difficult. Quote Link to comment Share on other sites More sharing options...
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