Guest guest Posted April 25, 2006 Report Share Posted April 25, 2006 Hi Kay, Seems like you got a " canned " reply. Interesting too that no 'specific' person responded for you - just the organization as a whole. In my experience with members of the CMT community, I have known a handful of people who have passed away - but phrenic nerve was not 100% of the cause: 1 woman was in her 80s, another woman was in her late 70's, one man in his 50's was extremely depressed and took his own life, another young woman in her 30's (also was HIV+), and another younger girl, in her teens, living in a mountain community (less oxygen to breathe) and the docs did not know of phrenic nerve damage. I have asked Dr. about this and see what his thoughts are and will post soon. I gave away all my copies of the HNF booklet, but I believe phrenic nerve problems are mentioned in it and this booklet can be given to doctors and ordered without membership from http://HNF-cure.org Everyone with CMT should remain aware and alert for all possibilities that may develop with CMT, while at the same time, not obsessively worrying about " what's going to happen " . ~ Gretchen Quote Link to comment Share on other sites More sharing options...
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