Guest guest Posted March 7, 2000 Report Share Posted March 7, 2000 Hi everyone, I was dx. with CMT at the age of 8. No one else in my family has it, so yes, I was all alone.. I felt that I was the only person in the world with CMT and because of that, I was never able to talk to anyone about how I was feeling or the pain I was in.. It was not until last year when I got my computer that I realized I was not the only one with all these symptoms.. I have had several surgeries and my doctor always spoke of others with CMT but to me they were not real, just something he would say to make me believe the operations would work..When I found the CMT chat room, I could not believe how many others there were..I can remember feeling like I was finally going to be able to make it because others had..I have made many new friends and have been able to meet 4 other persons so far with CMT..It is a good feeling to be able to talk to and meet others that have been going thru what I have..I am so glad that there are places to go now for CMTers for support and information.. I have learned more in less than a year about CMT than I ever did over the last 28 years since finding out about my CMT. Alice Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2000 Report Share Posted March 7, 2000 Hi everyone, I was dx. with CMT at the age of 8. No one else in my family has it, so yes, I was all alone.. I felt that I was the only person in the world with CMT and because of that, I was never able to talk to anyone about how I was feeling or the pain I was in.. It was not until last year when I got my computer that I realized I was not the only one with all these symptoms.. I have had several surgeries and my doctor always spoke of others with CMT but to me they were not real, just something he would say to make me believe the operations would work..When I found the CMT chat room, I could not believe how many others there were..I can remember feeling like I was finally going to be able to make it because others had..I have made many new friends and have been able to meet 4 other persons so far with CMT..It is a good feeling to be able to talk to and meet others that have been going thru what I have..I am so glad that there are places to go now for CMTers for support and information.. I have learned more in less than a year about CMT than I ever did over the last 28 years since finding out about my CMT. Alice Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2000 Report Share Posted March 7, 2000 alisha here, i was dx when i was 13 and only a few members had symptoms and problems and no one talked about it at all, its our family secret! well last year i met someone else in person with CMT and it felt great. i am on support lists for CMT and chat rooms but thats about it. i would love to meet others but i haven't yet, maybe when i get older i will. " I am not crazy, I am just a teenager! " http://home.talkcity.com/OceanBlvd/cmtx/index.html ICQ # 47695812 for information on CMT go here www.cmtint.org/ are u a kid or teenager with CMT??? wanna talk to others with CMT???? join here if u want to CMTchildren-subscribe (AT) onelist (DOT) com ______________________________________________________ Get Your Private, Free Email at http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2000 Report Share Posted March 7, 2000 In a message dated 3/7/00 10:22:59 AM Pacific Standard Time, Alhilton65@... writes: << I have learned more in less than a year about CMT than I ever did over the last 28 years since finding out about my CMT. Alice >> Me too. I am so greatful for the internet. jenny Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2000 Report Share Posted March 7, 2000 In a message dated 3/7/00 10:22:59 AM Pacific Standard Time, Alhilton65@... writes: << I have learned more in less than a year about CMT than I ever did over the last 28 years since finding out about my CMT. Alice >> Me too. I am so greatful for the internet. jenny Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2000 Report Share Posted March 7, 2000 Hi everyone. Marc here. I was diagnosed for many years with just " polyneuropathy. " And I did meet some folks along the way who shared that true but vague diagnosis. It wasn't until 1985, about five years after the CMT diagnosis, that I met another person with CMT. Unfortunately for me - or so I felt it was at the time - his symptoms were extremely mild, consisting of only slight hammer toes and no other problems. I still felt " different " and alone, due to the fact that my symptoms were much more severe. Plus, this fellow CMTer was not interested in developing a dialogue of any sort with me based upon our CMT. In fact he seemed to avoid me. Perhaps I reminded him of what might be his future. A few months later I met an older man with CMT. His fingers and toes were severely bent and claw-like. He had many CMT-related problems. However, his two biggest problems (from my perspective) were his excess weight and his negativity. He weighed close to four hundred pounds and was miserable. It was hard to be around him for long. Then, a few years later, my younger brother thought it might be good for me to get a CMT Newsletter. I guess it was a Christmas present. I did not enjoy it at all. It seemed as if the stories this publication primarily told were the most extreme. Stories of pain, misery, mis-shapen bodies, loneliness...not the type of reading I'd generally choose. Too depressing. Too real. When I moved from that dwelling, I chose to not have that newsletter forwarded. Somehow, I think, life has a way of chipping away at the stone, and despite my reluctance to look at the full scope of possibilities with CMT, I was - sometimes softly, sometimes more harshly - confronted with what CMT. I met people here and there - I traveled a bit - with CMT and I began to accept this disease. Ten years after first meeting someone with CMT, I again met someone and we instantly became good friends. CMT was our common-ground. I cannot avoid CMT. I did want to and I ran from it. But everytime I stopped running, there I was in the mirror. Now, I'm okay (most of the time) with the realities of CMT, but it has taken a long time. I've been using crutches for 27 years and I was falling all over myself for a number of years before I finally surrendered to the necessity (of crutches). And Now I've got all of you to type to...maybe someday we'll meet. Keep smiling! M Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2000 Report Share Posted March 7, 2000 Hi everyone. Marc here. I was diagnosed for many years with just " polyneuropathy. " And I did meet some folks along the way who shared that true but vague diagnosis. It wasn't until 1985, about five years after the CMT diagnosis, that I met another person with CMT. Unfortunately for me - or so I felt it was at the time - his symptoms were extremely mild, consisting of only slight hammer toes and no other problems. I still felt " different " and alone, due to the fact that my symptoms were much more severe. Plus, this fellow CMTer was not interested in developing a dialogue of any sort with me based upon our CMT. In fact he seemed to avoid me. Perhaps I reminded him of what might be his future. A few months later I met an older man with CMT. His fingers and toes were severely bent and claw-like. He had many CMT-related problems. However, his two biggest problems (from my perspective) were his excess weight and his negativity. He weighed close to four hundred pounds and was miserable. It was hard to be around him for long. Then, a few years later, my younger brother thought it might be good for me to get a CMT Newsletter. I guess it was a Christmas present. I did not enjoy it at all. It seemed as if the stories this publication primarily told were the most extreme. Stories of pain, misery, mis-shapen bodies, loneliness...not the type of reading I'd generally choose. Too depressing. Too real. When I moved from that dwelling, I chose to not have that newsletter forwarded. Somehow, I think, life has a way of chipping away at the stone, and despite my reluctance to look at the full scope of possibilities with CMT, I was - sometimes softly, sometimes more harshly - confronted with what CMT. I met people here and there - I traveled a bit - with CMT and I began to accept this disease. Ten years after first meeting someone with CMT, I again met someone and we instantly became good friends. CMT was our common-ground. I cannot avoid CMT. I did want to and I ran from it. But everytime I stopped running, there I was in the mirror. Now, I'm okay (most of the time) with the realities of CMT, but it has taken a long time. I've been using crutches for 27 years and I was falling all over myself for a number of years before I finally surrendered to the necessity (of crutches). And Now I've got all of you to type to...maybe someday we'll meet. Keep smiling! M Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2000 Report Share Posted March 7, 2000 Alisha, my daughter is 13 and has CMT too. Her name is . Maybe you two could connect. A woman named Kathy in Arizona was kind enough to tell me about you. 's email is gemmy0629@... Her mother a Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2000 Report Share Posted March 7, 2000 Thank you Marc for your wonderful thoughts.It is nice to know there are others who understand. Elle > Hi everyone. Marc here. I was diagnosed for many years with just > " polyneuropathy. " And I did meet some folks along the way who shared that > true but vague diagnosis. > > It wasn't until 1985, about five years after the CMT diagnosis, that I met > another person with CMT. Unfortunately for me - or so I felt it was at the > time - his symptoms were extremely mild, consisting of only slight hammer > toes and no other problems. I still felt " different " and alone, due to the > fact that my symptoms were much more severe. Plus, this fellow CMTer was not > interested in developing a dialogue of any sort with me based upon our CMT. > In fact he seemed to avoid me. Perhaps I reminded him of what might be his > future. > > A few months later I met an older man with CMT. His fingers and toes were > severely bent and claw-like. He had many CMT-related problems. However, his > two biggest problems (from my perspective) were his excess weight and his > negativity. He weighed close to four hundred pounds and was miserable. It > was hard to be around him for long. > > Then, a few years later, my younger brother thought it might be good for me > to get a CMT Newsletter. I guess it was a Christmas present. I did not enjoy > it at all. It seemed as if the stories this publication primarily told were > the most extreme. Stories of pain, misery, mis-shapen bodies, > loneliness...not the type of reading I'd generally choose. Too depressing. > Too real. When I moved from that dwelling, I chose to not have that > newsletter forwarded. > > Somehow, I think, life has a way of chipping away at the stone, and despite > my reluctance to look at the full scope of possibilities with CMT, I was - > sometimes softly, sometimes more harshly - confronted with what CMT. I met > people here and there - I traveled a bit - with CMT and I began to accept > this disease. Ten years after first meeting someone with CMT, I again met > someone and we instantly became good friends. CMT was our common-ground. I > cannot avoid CMT. I did want to and I ran from it. But everytime I stopped > running, there I was in the mirror. > > Now, I'm okay (most of the time) with the realities of CMT, but it has taken > a long time. I've been using crutches for 27 years and I was falling all > over myself for a number of years before I finally surrendered to the > necessity (of crutches). > > And Now I've got all of you to type to...maybe someday we'll meet. Keep > smiling! M Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2000 Report Share Posted March 8, 2000 Mark You are quite an inspiration to those with CMT. Acceptance is a hard thing, but once you get past that, you can move on and try to do things that make life easier with CMT. Terry Re: finding others Hi everyone. Marc here. I was diagnosed for many years with just " polyneuropathy. " And I did meet some folks along the way who shared that true but vague diagnosis. It wasn't until 1985, about five years after the CMT diagnosis, that I met another person with CMT. Unfortunately for me - or so I felt it was at the time - his symptoms were extremely mild, consisting of only slight hammer toes and no other problems. I still felt " different " and alone, due to the fact that my symptoms were much more severe. Plus, this fellow CMTer was not interested in developing a dialogue of any sort with me based upon our CMT. In fact he seemed to avoid me. Perhaps I reminded him of what might be his future. A few months later I met an older man with CMT. His fingers and toes were severely bent and claw-like. He had many CMT-related problems. However, his two biggest problems (from my perspective) were his excess weight and his negativity. He weighed close to four hundred pounds and was miserable. It was hard to be around him for long. Then, a few years later, my younger brother thought it might be good for me to get a CMT Newsletter. I guess it was a Christmas present. I did not enjoy it at all. It seemed as if the stories this publication primarily told were the most extreme. Stories of pain, misery, mis-shapen bodies, loneliness...not the type of reading I'd generally choose. Too depressing. Too real. When I moved from that dwelling, I chose to not have that newsletter forwarded. Somehow, I think, life has a way of chipping away at the stone, and despite my reluctance to look at the full scope of possibilities with CMT, I was - sometimes softly, sometimes more harshly - confronted with what CMT. I met people here and there - I traveled a bit - with CMT and I began to accept this disease. Ten years after first meeting someone with CMT, I again met someone and we instantly became good friends. CMT was our common-ground. I cannot avoid CMT. I did want to and I ran from it. But everytime I stopped running, there I was in the mirror. Now, I'm okay (most of the time) with the realities of CMT, but it has taken a long time. I've been using crutches for 27 years and I was falling all over myself for a number of years before I finally surrendered to the necessity (of crutches). And Now I've got all of you to type to...maybe someday we'll meet. Keep smiling! M ------------------------------------------------------------------------ GET A NEXTCARD VISA, in 30 seconds! Get rates as low as 2.9% Intro or 9.9% Fixed APR and no hidden fees. Apply NOW! http://click.egroups.com/1/936/5/_/616793/_/952463786/ ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2000 Report Share Posted March 8, 2000 Mark You are quite an inspiration to those with CMT. Acceptance is a hard thing, but once you get past that, you can move on and try to do things that make life easier with CMT. Terry Re: finding others Hi everyone. Marc here. I was diagnosed for many years with just " polyneuropathy. " And I did meet some folks along the way who shared that true but vague diagnosis. It wasn't until 1985, about five years after the CMT diagnosis, that I met another person with CMT. Unfortunately for me - or so I felt it was at the time - his symptoms were extremely mild, consisting of only slight hammer toes and no other problems. I still felt " different " and alone, due to the fact that my symptoms were much more severe. Plus, this fellow CMTer was not interested in developing a dialogue of any sort with me based upon our CMT. In fact he seemed to avoid me. Perhaps I reminded him of what might be his future. A few months later I met an older man with CMT. His fingers and toes were severely bent and claw-like. He had many CMT-related problems. However, his two biggest problems (from my perspective) were his excess weight and his negativity. He weighed close to four hundred pounds and was miserable. It was hard to be around him for long. Then, a few years later, my younger brother thought it might be good for me to get a CMT Newsletter. I guess it was a Christmas present. I did not enjoy it at all. It seemed as if the stories this publication primarily told were the most extreme. Stories of pain, misery, mis-shapen bodies, loneliness...not the type of reading I'd generally choose. Too depressing. Too real. When I moved from that dwelling, I chose to not have that newsletter forwarded. Somehow, I think, life has a way of chipping away at the stone, and despite my reluctance to look at the full scope of possibilities with CMT, I was - sometimes softly, sometimes more harshly - confronted with what CMT. I met people here and there - I traveled a bit - with CMT and I began to accept this disease. Ten years after first meeting someone with CMT, I again met someone and we instantly became good friends. CMT was our common-ground. I cannot avoid CMT. I did want to and I ran from it. But everytime I stopped running, there I was in the mirror. Now, I'm okay (most of the time) with the realities of CMT, but it has taken a long time. I've been using crutches for 27 years and I was falling all over myself for a number of years before I finally surrendered to the necessity (of crutches). And Now I've got all of you to type to...maybe someday we'll meet. Keep smiling! M ------------------------------------------------------------------------ GET A NEXTCARD VISA, in 30 seconds! Get rates as low as 2.9% Intro or 9.9% Fixed APR and no hidden fees. Apply NOW! http://click.egroups.com/1/936/5/_/616793/_/952463786/ ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
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