Guest guest Posted April 18, 2000 Report Share Posted April 18, 2000 what about blood testing? this can show evidence of some types of CMT. Screening at age 36 Hello, I am 36 years of age and live in Melbourne, Australia. I have a sister and father with CMT. My sister, who is 32, is very severely affected. I show no signs of CMT, although sometimes I think my hands are very weak or uncoordinated. Two years ago my husband and I visited the genetics clinic at the major childrens teaching hospital for counselling. We are still considering a family. My knee reflexes were tested. Apart from that I was told they dont think I have CMT. I have always felt this summation was unsatisfactory. I wish there was a definitive test that could tell me if I have CMT. How rare is it that a person of my age would show no symptoms? Have I received the right counselling? I am afraid of pregnancy inducing CMT symptoms and therefore already exposed the fetus to a risk I am trying to prevent. I do not want to bring this upon someone, knowing the agony my sister has been through. Any thoughts or comments would be helpful, especially from those faced with the same dilemma. ------------------------------------------------------------------------ Get paid for the stuff you know! Get answers for the stuff you don't. And get $10 to spend on the site! http://click.egroups.com/1/2200/7/_/616793/_/956045113/ ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2000 Report Share Posted April 18, 2000 Hi I am also from Australia, Newcastle, I am 35 and have four children. I have CMT type 2 they think any way. Out of my four children only my ten year old son is showing signs of CMT.Mainly he has problems with his ankles as he is into a lot of sports. I was'nt dx with CMT until I was almost eight months pregnant with my son who was my third child. So I did'nt know I might be able to pass it on too my children. But I have since had a baby girl who is two and she is fine. I show a lot of signs of CMT, skinny legs, a lot of wasting, and my balance is pretty bad but I still get around unaided. My mother who is 56 has just been tested and they say like you she is only showing slight signs of CMT you would'nt even no she had it..I could'nt believe it when the test came back. She had a nerve conductive test done last Wednesday So my Mum is 56 and is'nt really showing any signs .. I have been told that some people can have CMT and not know..May never really show any signs or only slight signs. I don't know about every one else but when I was pregnant it did'nt make my CMT any worse the only thing was I was really tired and had to watch my weight and close to the end I had a few problems getting around because of not having the muscels in my legs to take my weight. I had to have four C sections...but they don't know if that was because of the CMT or not. Lee-anne To: CMTUS (AT) e> Sent: Tuesday, April 18, 2000 6:05 PM Subject: Screening at age 36 Hello, I am 36 years of age and live in Melbourne, Australia. I have a sister and father with CMT. My sister, who is 32, is very severely affected. I show no signs of CMT, although sometimes I think my hands are very weak or uncoordinated. Two years ago my husband and I visited the genetics clinic at the major childrens teaching hospital for counselling. We are still considering a family. My knee reflexes were tested. Apart from that I was told they dont think I have CMT. I have always felt this summation was unsatisfactory. I wish there was a definitive test that could tell me if I have CMT. How rare is it that a person of my age would show no symptoms? Have I received the right counselling? I am afraid of pregnancy inducing CMT symptoms and therefore already exposed the fetus to a risk I am trying to prevent. I do not want to bring this upon someone, knowing the agony my sister has been through. Any thoughts or comments would be helpful, especially from those faced with the same dilemma. ------------------------------------------------------------------------ Get paid for the stuff you know! Get answers for the stuff you don't. And get $10 to spend on the site! http://click.egroups.com/1/2200/7/_/616793/_/956045113/ ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2000 Report Share Posted April 18, 2000 Hi Have you had any neuro testing done? the Nerve Conduction Study or electromyogram done? These tests should show if you have any CMT or not. They will not tell you the type, just if you have it or not. Hope you can find some help for you and your family. This is not an easy disease to get good doctors to help you - they seem to know so little! Good Luck Screening at age 36 Hello, I am 36 years of age and live in Melbourne, Australia. I have a sister and father with CMT. My sister, who is 32, is very severely affected. I show no signs of CMT, although sometimes I think my hands are very weak or uncoordinated. Two years ago my husband and I visited the genetics clinic at the major childrens teaching hospital for counselling. We are still considering a family. My knee reflexes were tested. Apart from that I was told they dont think I have CMT. I have always felt this summation was unsatisfactory. I wish there was a definitive test that could tell me if I have CMT. How rare is it that a person of my age would show no symptoms? Have I received the right counselling? I am afraid of pregnancy inducing CMT symptoms and therefore already exposed the fetus to a risk I am trying to prevent. I do not want to bring this upon someone, knowing the agony my sister has been through. Any thoughts or comments would be helpful, especially from those faced with the same dilemma. ------------------------------------------------------------------------ Get paid for the stuff you know! Get answers for the stuff you don't. And get $10 to spend on the site! http://click.egroups.com/1/2200/7/_/616793/_/956045113/ ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2000 Report Share Posted April 18, 2000 >How rare is it that a person of my age would show no symptoms? >CMT in my family seems to show up later in life. My grandfather has just been showing signs in the last few years or so and he's 82. The same with some of his brothers. However,my mother has had CMT since she was a child. I'm just starting to show signs. I'm almost 25. By the way, I have two children of my own and they are such a blessing and a joy. I discussed with my husband even before we were married about the possibility of me or any children we would have having CMT. He said we would take it one day at a time and he'd stand beside me no matter what. I know its a tough decision to make, but,I don't regret for one second having my children. One more thing. The doctors told my mother not to have children because they probably wouldn't be able to walk. She had four children. And we all walk. We may be a little awkward sometimes but we can walk! I'm so grateful to my mother for not listening to the doctors because today I am enjoying life. ----------------------------------------------- FREE! The World's Best Email Address @email.com Reserve your name now at http://www.email.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2000 Report Share Posted April 19, 2000 I have, but that's really just a reaffirmation of what they can see physically. They knew I had it without the blood testing/nerve tests. Re: Screening at age 36 Hi Have you had any neuro testing done? the Nerve Conduction Study or electromyogram done? These tests should show if you have any CMT or not. They will not tell you the type, just if you have it or not. Hope you can find some help for you and your family. This is not an easy disease to get good doctors to help you - they seem to know so little! Good Luck Screening at age 36 Hello, I am 36 years of age and live in Melbourne, Australia. I have a sister and father with CMT. My sister, who is 32, is very severely affected. I show no signs of CMT, although sometimes I think my hands are very weak or uncoordinated. Two years ago my husband and I visited the genetics clinic at the major childrens teaching hospital for counselling. We are still considering a family. My knee reflexes were tested. Apart from that I was told they dont think I have CMT. I have always felt this summation was unsatisfactory. I wish there was a definitive test that could tell me if I have CMT. How rare is it that a person of my age would show no symptoms? Have I received the right counselling? I am afraid of pregnancy inducing CMT symptoms and therefore already exposed the fetus to a risk I am trying to prevent. I do not want to bring this upon someone, knowing the agony my sister has been through. Any thoughts or comments would be helpful, especially from those faced with the same dilemma. ------------------------------------------------------------------------ Get paid for the stuff you know! Get answers for the stuff you don't. And get $10 to spend on the site! http://click.egroups.com/1/2200/7/_/616793/_/956045113/ ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2000 Report Share Posted April 19, 2000 Oh, sorry, I thought you asked if there was a test that told you if you had CMT or not. And that the doctors had told you that they didn't think you did have it, but that you kind of thought you did.... Did I mis-understand? The EMG is the test that tells you if you have it or not. Any type. I thought you hadn't had these done. Screening at age 36 > > > Hello, I am 36 years of age and live in Melbourne, Australia. I have > a > sister and father with CMT. My sister, who is 32, is very severely > affected. I show no signs of CMT, although sometimes I think my hands > are very weak or uncoordinated. Two years ago my husband and I > visited > the genetics clinic at the major childrens teaching hospital for > counselling. We are still considering a family. My knee reflexes were > tested. Apart from that I was told they dont think I have CMT. I have > always felt this summation was unsatisfactory. I wish there was a > definitive test that could tell me if I have CMT. How rare is it that > a person of my age would show no symptoms? Have I received the right > counselling? I am afraid of pregnancy inducing CMT symptoms and > therefore already exposed the fetus to a risk I am trying to prevent. > I do not want to bring this upon someone, knowing the agony my sister > has been through. Any thoughts or comments would be helpful, > especially from those faced with the same dilemma. > > > ------------------------------------------------------------------------ > Get paid for the stuff you know! > Get answers for the stuff you don't. And get $10 to spend on the site! > http://click.egroups.com/1/2200/7/_/616793/_/956045113/ > ------------------------------------------------------------------------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2000 Report Share Posted April 26, 2000 Moggy? WELCOME!!!!!! Hi, my name is Jeanie and I'm 39 married and have 2 kids (f/16 & m/12). I have had CMT since age 5. We don't know what type. My brother, Father, grandfather, & great grandmother along with many other distant relatives also have CMT. When I got married my mother tried in vain to talk me out of having children because of the 50/50 chance of my children having CMT. I felt that I was born and I was managing just like April had said in her post, so I didn't listen to my mom. I Love my kids very much.... However the pregnancies did speed up my disability and while pregnant I had troubles walking at the end. Not because of weight but because of a nerve that would cause problems in my spine. It would send the wrong message to my brain and my legs would collaspe. I did fine raising my kids when they were young, they learned they had to play around me because I could not run to protect them if they were to far away. Babies can also sence what is required. When I would carry my kids they knew they couldn't lean away from me because it would throw off my balance. But, if I picked up one of my nieces that hadn't been around me much they would be all scrrrrmy and I would have to grab hold of something for balance. The same has even been true with my cat. She loves to play fetch. I am the only person that she brings her toy to in order to get me to throw it for her. For everyone else, she will drop it several feet away and make them get it and throw it. It hasn't been until the last 3 years that I felt I did the wrong thing by having kids. My daughter (16) hates my CMT and it has caused us to not be as close as we had always been. She blames me for not knowing if she has CMT or not and that she now has to decide about what carreer or to have children or not. Since she hates my CMT she has proclaimed she will not have children. She will adopt. (Our son is adopted). My second child died of SIDS at 7 weeks. At the time of his birth I had my tubes tied because I was afraid to have anymore pregnancies with my CMT problems... I am now glad we only adoted one child.... I have no energy for the two I have now.... Unfortunately I feel I am cheating them... I know I shouldn't, but I do. This is how I felt and feel.... Jeanie (from Oregon) Moonglow21@... Jeanie421@... come and visit http://www.egroups.com/group/Charcot-Marie-Toothonlinechat " >CMT chat room http://www.egroups.com/group/Charcot-Marie-Toothonlinechat Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2000 Report Share Posted April 26, 2000 Moggy? WELCOME!!!!!! Hi, my name is Jeanie and I'm 39 married and have 2 kids (f/16 & m/12). I have had CMT since age 5. We don't know what type. My brother, Father, grandfather, & great grandmother along with many other distant relatives also have CMT. When I got married my mother tried in vain to talk me out of having children because of the 50/50 chance of my children having CMT. I felt that I was born and I was managing just like April had said in her post, so I didn't listen to my mom. I Love my kids very much.... However the pregnancies did speed up my disability and while pregnant I had troubles walking at the end. Not because of weight but because of a nerve that would cause problems in my spine. It would send the wrong message to my brain and my legs would collaspe. I did fine raising my kids when they were young, they learned they had to play around me because I could not run to protect them if they were to far away. Babies can also sence what is required. When I would carry my kids they knew they couldn't lean away from me because it would throw off my balance. But, if I picked up one of my nieces that hadn't been around me much they would be all scrrrrmy and I would have to grab hold of something for balance. The same has even been true with my cat. She loves to play fetch. I am the only person that she brings her toy to in order to get me to throw it for her. For everyone else, she will drop it several feet away and make them get it and throw it. It hasn't been until the last 3 years that I felt I did the wrong thing by having kids. My daughter (16) hates my CMT and it has caused us to not be as close as we had always been. She blames me for not knowing if she has CMT or not and that she now has to decide about what carreer or to have children or not. Since she hates my CMT she has proclaimed she will not have children. She will adopt. (Our son is adopted). My second child died of SIDS at 7 weeks. At the time of his birth I had my tubes tied because I was afraid to have anymore pregnancies with my CMT problems... I am now glad we only adoted one child.... I have no energy for the two I have now.... Unfortunately I feel I am cheating them... I know I shouldn't, but I do. This is how I felt and feel.... Jeanie (from Oregon) Moonglow21@... Jeanie421@... come and visit http://www.egroups.com/group/Charcot-Marie-Toothonlinechat " >CMT chat room http://www.egroups.com/group/Charcot-Marie-Toothonlinechat Quote Link to comment Share on other sites More sharing options...
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