Guest guest Posted April 18, 2000 Report Share Posted April 18, 2000 Welcome moggy, you didn't say your name, hence I used your email addy name. I have known of CMT 'appearing' later in life. Mine tho appeared in childhood. I have chosen not to have children 1) because of passing it on and 2) don't think I could withstand the physical effects of pregnancy. Everyone is different. There are alot of great Mom's on this list who have wonderful children and I'm sure they will chime in with their comments. There are DNA blood tests for only 3 of the 20 types of CMT. Maybe you could email the lab doing that here in the US. Last week Kat posted that there is only an 80% positive rate, so I guess this means that even after spending $ for the DNA tests for only 3 types, a person could still have another type of CMT. That website for the DNA tests that I know is http://www.athenadiagnostics.com They told me the tests are $495.00 each. I have not had these tests, when I was diagnosed as a kid, there were no tests like this. Later, the EMG test served the same purpose. Are there any neurologists in private practice in your area? I have always had better 'service' from them and found out more - the 'teaching hospitals' just seemed to treat me like a guinea pig. Gretchen moggy@... wrote: > > 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 I too do not have kids. Was diagnosed later in life. Got married in my late 30's, did not have CMT at that time, and after I was married, years later, found out I had it. I know that pregnancy would have been very rough, and as the years passed, I knew my limitations and knew that it was not in the cards for me. With working too, I knew I would not have the stamina I would need. The extra weight also was a fear of mine, because when I put on poundage now it is like carrying an elephant around, so I pay special attention to trying to keep my weight down. Welcome " moggy " Welcome moggy, you didn't say your name, hence I used your email addy name. I have known of CMT 'appearing' later in life. Mine tho appeared in childhood. I have chosen not to have children 1) because of passing it on and 2) don't think I could withstand the physical effects of pregnancy. Everyone is different. There are alot of great Mom's on this list who have wonderful children and I'm sure they will chime in with their comments. There are DNA blood tests for only 3 of the 20 types of CMT. Maybe you could email the lab doing that here in the US. Last week Kat posted that there is only an 80% positive rate, so I guess this means that even after spending $ for the DNA tests for only 3 types, a person could still have another type of CMT. That website for the DNA tests that I know is http://www.athenadiagnostics.com They told me the tests are $495.00 each. I have not had these tests, when I was diagnosed as a kid, there were no tests like this. Later, the EMG test served the same purpose. Are there any neurologists in private practice in your area? I have always had better 'service' from them and found out more - the 'teaching hospitals' just seemed to treat me like a guinea pig. Gretchen moggy@... wrote: > > 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 20, 2000 Report Share Posted April 20, 2000 In a message dated 4/19/00 6:09:47 AM Pacific Daylight Time, littlet@... writes: << I know that pregnancy would have been very rough, >> I felt great when I was Pg. Untl the last 8 weeks anyway. Then i just felt really heavy. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2000 Report Share Posted April 20, 2000 In a message dated 4/19/00 6:09:47 AM Pacific Daylight Time, littlet@... writes: << I know that pregnancy would have been very rough, >> I felt great when I was Pg. Untl the last 8 weeks anyway. Then i just felt really heavy. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2000 Report Share Posted April 20, 2000 In a message dated 4/19/00 6:09:47 AM Pacific Daylight Time, littlet@... writes: << I know that pregnancy would have been very rough, >> I felt great when I was Pg. Untl the last 8 weeks anyway. Then i just felt really heavy. Quote Link to comment Share on other sites More sharing options...
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