Guest guest Posted June 3, 2005 Report Share Posted June 3, 2005 , I do not have the so called CMT characteristic in the legs. I am 6 foot 3 and very " big boned " as some might say. I have very long legs. 36 " inseam. Matter of fact I never knew about the very thin legs that can come with CMT until I found out I had it this past January. Thin legs is just one of many signs of CMT. And I'm sure you already know that everyone has different symptoms. My genetic testing came back negative for CMT. I was diagnosed with the nerve conduction test, the high arches, pain, fatigue, hammertoes and the lack of family history. The only history is with me since I have had bad feet since the age of 5 or 6. You could try the genetic testing but as the specialist who diagnosed me said 'it is possible to have a negative result but still have a form of CMT'. Your experience with your doctor just reinforces my anger with some doctors today. My neurologist seemed very concerned and caring until the diagnosis of CMT Type2 came from the specialist. Now he seems very matter-of-fact and has the " there is nothing more I can do for you " attitude. And for this he charges $170 per visit. When I came out of his office at my last visit I said to myself there may be nothing he can do for me but he could at least ACT like he cares about his patients. For me it's time to find a new doc. Is there another doctor you could see or do you have an MDA office near you? Maybe they could confirm your CMT diagnosis. Good luck and best wishes. Elaina Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2005 Report Share Posted June 4, 2005 DEAR JEN, YES, I DO HAVE !!!! BUT MY MOM HAD CMT AND SHE HAD GREAT LEGS... I MEANT, NOT LIKE A CHAMPAGNE BOTTLE TYPE LIKE MINE...SHE HAD A STRONG LOOKS AND YET, SHE USED TO SAY... " MY LEGS FEELS SO WEAK AT ALL TIMES " ...I WAS TOO YOUNG AND NEVER UNDERSTOOD WHY SHE MEANT BECAUSE THE LOOKS WAS " SO NORMAL " ...AND ME, I NEVER THOUGH IN MY LIFE THAT I WOULD HAVE THE SAME SYNDROME. I COULD DO SO MUCH WHEN I WAS MUCH YOUNGER, DANCE, PLAY, WALK FOR LOND DISTANCE, ETC...WELL, CE LA VIE! TWO YEARS AGO IT WAS WHEN I STARTED TO FEEL THIS STRANGE WEAKNESS,FATIGUE,LUCK OF BALANCE AND REALIZED THAT I HAD NO REFLEXES EITHER! NOW, JEN, I THINK THE IDEA OF HAVING A DNA TEST , EMG, ETC.. IS A GOOD IDEA, LIKE THAT YOU WOULD KNOW FOR SURE WHAT YOU REALLY HAVE. ALL THE BEST WISHES FOR YOU! JOANA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2005 Report Share Posted June 4, 2005 I was told at the time of my diagnosis that I had " classic upide down champange bottle legs related to the CMT " - large calves from using those muscles to make up for the non muscles in my feet and ankles. Yet another family member was told she had CMT legs and hers are so skinny it looks like skin covering bone. So tell me just what is the CMT leg suppose to look like????? Oh yes, the relative is flat footed and my arch is so high I have always had trouble buying shoes. Cathleen in Arkansas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2005 Report Share Posted June 6, 2005 Hi : I would ask for a genetic test..but I do know that nerve problems in the spine can cause peroneal neuropathy that isn't CMT. We have a neighbour whose daughter had damage to spinal nerves during an operation,the result is peroneal neuropathy in one leg. Hope this helps Sally Quote Link to comment Share on other sites More sharing options...
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