Guest guest Posted May 14, 2000 Report Share Posted May 14, 2000 << They say that " Females who are mutation carriers may be asymptomatic or may have a mild neuropathy " and I am the example that this is not true. >> , each time I see that statement somewhere I too know it is WRONG. I know of several Type-X linked women who are very much affected by their CMT - like you are. It makes no sense to say that. It's good he has you to show him differently, too. There are a few CMT information sites in German online: http://search.MegaSpider.com/TopSearch.html$V?Charcot+Marie+Tooth http://cmu.unige.ch/ssn/brainweek.html URL für diese Seite: http://www.egroups.de/group/charcot_marie_tooth Hope this helps. Kat Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 2000 Report Share Posted May 14, 2000 I know this site and it is quite good but they have one mistake (but a understandable one): They say that " Females who are mutation carriers may be asymptomatic or may have a mild neuropathy " and I am the example that this is not true. My doctors told me that I am very heavily affected and they made photos of my hands and legs because other doctors and researchers don' t believe that there are women which are heavily affected! This shows that the research of our disease and also other x-linked diseases still has to go on. Bye, jege6666@... schrieb: > http://www.geneclinics.org/profiles/cmtx/. > someone inquired about the cmt-x I believe. > the URL above came through the cmtus links. great info for the cmt-x if you > haven't run across it already > > ------------------------------------------------------------------------ > Remember four years of good friends, bad clothes, explosive chemistry > experiments. > http://click.egroups.com/1/4051/10/_/616793/_/958272834/ > ------------------------------------------------------------------------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 2000 Report Share Posted May 14, 2000 In a message dated 5/14/00 10:03:21 AM Eastern Daylight Time, KathleenLS@... writes: << They say that " Females who are mutation carriers may be asymptomatic or may have a mild neuropathy " and I am the example that this is not true. >> >> for myself I didn't feel that all were asymptomatic? It seems that to is a mixed bag E Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 2000 Report Share Posted May 14, 2000 on the previous message I sent, it failed to come through with the words MAY BE & MAY HAVE highlighted E Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 2000 Report Share Posted May 14, 2000 << for myself I didn't feel that all were asymptomatic? It seems that to is a mixed bag >> True, but they make NO allowance for anyone being more than lightly affected. Kat Quote Link to comment Share on other sites More sharing options...
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