Guest guest Posted May 3, 2009 Report Share Posted May 3, 2009 That's a good question, . I've wondered about this myself. My family has over-developed calf muscles, at least until the senior years. It's the reason my diagnosis was missed for over 40 years. The word definitely needs to get out to all doctors that the calf muscles don't have to be small in order for the diagnosis to be CMT. The misinformation out there & stories like your cousin's make me sad. Not only did this misinformation cause my diagnosis to be delayed, which had it's only negative consequences, but at nearly every visit to the doctor I'm still injured in some way. They look at my appearance and believe I should be stronger than I am. Before they touch me, I warn them how fragile I am and beg them to be careful, but inevitably I'm in pain for days afterwards. Usually it's from my back and knees, but a couple of days ago, my doc injured both feet and broke a bone in one of them while testing my distal strength. He didn't mean it, of course, and he was only using one finger, but the doctors just can't seem to understand how fragile I really am. A normal appearance of muscles doesn't mean anything. I wish there could be a major educational campaign to help doctors really understand CMT, so the misdiagnosis and misunderstanding would be eliminated. Any ideas anyone? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2009 Report Share Posted May 4, 2009 : Mega calves come from years of toe walking, another of the prodromal signs some peripheral neuropathy. Before I developed the foot-drop that was the first sign of CMT, my calves measured 18.5 inches in circumference while my knee-floor measurement was only 18 inches. My calves were the result of years of soccer and bicycle racing. When the pegged look popularized by the Beatles was all that was sold in stores, I couldn't get my calf past the thigh section. I discovered L.L. Bean and the high-rise style they carried and never spent a day in jail for public indecency. Today I sport the hairless pipe stem lower legs you describe while my thighs are still large. They help me walk at the expense of extreme body heat that causes me to sweat copiously no matter what the outdoor temperature. I go through 3 pairs of socks and at least 2 shirts every day. Regards. --Larry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2009 Report Share Posted May 5, 2009 I'm glad to hear I'm not the only one with mega calves! Most of the photos I have seen with anyone with CMT always show toothpick legs. Yes, I was a toe walker until I got my AFO 4 1/2 years ago. I had to learn to walk totally different. Now I have to be really careful when I walk around the house without my brace on or I stub my toes and end up on the floor--in pain! My husband has always teased me about my " football-player " legs. Crock Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2009 Report Share Posted May 6, 2009 Me too..........I have always had heavy calves and thick ankles but I never toe walked that I know of. I always thought it odd when I found out I had CMT1B about 10 years ago (when I was 65) that my legs were not same as shown on some web sites but I definitely had all the same symptoms of CMT - gait, could not run, balance, fatigue etc. My family called my legs " piano legs " . June from PA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2009 Report Share Posted May 6, 2009 All four children in my family have heavy claves and high arches. So far, I am the only one diagnosed with CMT. I was diagnosed at age 56. J. Warren Quote Link to comment Share on other sites More sharing options...
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