Guest guest Posted September 10, 2003 Report Share Posted September 10, 2003 Welcome to all the new members. I know you will find this group to be very helpful. I received the results of my DNA test yesterday - I have CMT1B. I am wondering if someone can tell me what is the difference between A, B, etc. besides the genetic link. I have the result printout from Athena Labs but it is like trying to read a foreign language! Also, I sent away for a copy of CMT Today magazine. It seemed very useful and interesting, and am planning on subscribing. Are there other publications and groups that people have joined that are worthwhile and does anyone have anything to say about CMT Today? Thank you, Deb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2005 Report Share Posted March 22, 2005 Deb, nice to know there are others out there (not that this is a " nice " thing to deal with!). I am also experiencing clumsiness, loss of balance...am still able to walk - but because my balance is off, I need to grab things a lot more. I don't have the hammertoes, but both my sisters now do, and they have been dealing with these symptoms for awhile now. Something interesting that I discovered yeterday as I was filling out my family history before going to the CMT clinic in Detroit... My grandfather started seeing the symptoms in his 50's, my dad started them in his 40's and my sisters and now myself started seeing them in our 30's. I wonder if anyone else has seen this trend? Something unique between my immediate family: my oldest sister and I have constant pain in our feet as well as our hands. However my father and middle-sister do not. I wonder if that is something? Thanks for the note! Chad Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2005 Report Share Posted March 23, 2005 Chad, I have a younger sister that did not have any signs of CMT at all until she was in her late twenties. The only thing that is bothering her now is her feet, she does not have hammer toes and I do. I started having signs at a very young age and so did my son, but he does not have trouble with his hands like me, so I guess it affects us all a little different. Sue Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2005 Report Share Posted March 23, 2005 Chad, Hey, that is interesting - never thought about which decade in life my family was affected by CMT1B. You are right. Though undiagnosed (CMT was unheard of way back when), my great grandfather who lived to be 92 walked with 2 canes when he did walk and usually sat on a board with wheels on it (homemade wheel chair) - this story from my Dad who was born in 1900 so great grandfather was his grandfather in early 1900s. Then my own grandfather who died in the 1940s walked with 2 canes and suffered from imbalance showed his symptoms in his 70s. My own father's symptoms became pronounced in his 60s. My symptoms became accute enough by the time I was in my late 50s for me to start inquiring to Drs as to what was wrong. And now my daughter, age 47, has started with small symptoms and is the one with the diagnosis of CMT1B etc. Interesting - each generation seems to have started about a decade earlier than the last with the symptoms - tho the symptoms were there since birth and only became pronounced in late adulthood. June Quote Link to comment Share on other sites More sharing options...
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