Guest guest Posted July 7, 2008 Report Share Posted July 7, 2008 Jackie how is your sister? Not to worry you but I knew someone years ago that had CMT and MS. If it is MS I have been keeping up with MS research and it is very promising. I am hoping that any medication that can repair the myelin sheath will work for CMT as well. I don't think her doctor should have left that message on her machine. How did she do this weekend? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2008 Report Share Posted July 8, 2008 , Thanks for asking My sister tends to overeact with medical things and i think she misinterpreted the message; the doctor's secretary called and said it was too difficult to discuss findings over the phone. i told her because there may be a lot of what he wants to explain and it could be something like a disc problem. she is at the doctor now and i am on pins and needles waiting to hear. I asked her to call me while she was seeing him so i could ask a question she may not think of. This is her GP and not a neurologist, so i imagine he is just going to refer her to someone else.i think i am more worried about CMT, because that means i was not just a new mutation, but that it could affect any of my nieces or my son. Will keep you posted jackie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2008 Report Share Posted July 9, 2008 I understand that Jackie! My nephew was falling all over the place and I got a panicked phone call from his mother. Turns out it was nothing but everyone was what if-ing. In a message dated 7/8/2008 4:18:22 P.M. Pacific Daylight Time, jackiesachs@... writes: i think i am more worried about CMT, because that means i was not just a new mutation, but that it could affect any of my nieces or my son. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2008 Report Share Posted July 9, 2008 spoke to sister; they saw some kind of enlargement of a ventricle in the brain on the MRI. not sure what that means but they are referring her to a neurologist. will keep you posted jackie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2008 Report Share Posted July 9, 2008 Hi Jackie, Just read your post. Back in the 1980's I had a concussion from riding accidnt. A brain scan followed. All they found was that I have 'enlarged brain ventricles'. No one said anything about it being anything to worry about and my life contined with no problems. Years later I casually mentioned it to a doctor-friend and all he said was " interesting " . Gretchen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2008 Report Share Posted July 9, 2008 Hopefully what ever she has is treatable! In a message dated 7/9/2008 8:37:08 A.M. Pacific Daylight Time, jackiesachs@... writes: they saw some kind of enlargement of a ventricle in the brain on the MRI. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2008 Report Share Posted July 9, 2008 hmmm, thanks. that actually makes me feel better! now, if only we can find out why her walking has changed. The good thing is she said it is happening rapidly, which leads me to believe it is not CMT, but maybe medically related or disc related. jackie Re: Jackie's sister Hi Jackie, Just read your post. Back in the 1980's I had a concussion from riding accidnt. A brain scan followed. All they found was that I have 'enlarged brain ventricles'. No one said anything about it being anything to worry about and my life contined with no problems. Years later I casually mentioned it to a doctor-friend and all he said was " interesting " . Gretchen Quote Link to comment Share on other sites More sharing options...
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