Guest guest Posted January 13, 2005 Report Share Posted January 13, 2005 Welcome Deborah, I don't post much but I have found this site to be a wealth of information. I am so glad to have found it and I'm sure you will too. You mentioned your hand strength. I too have very little strength in my hands. When you spread your hand, do you have a large indention between your thumb and pointer finger. My doctor told me this is another symtom of CMT, and the deeper the indention the deeper the muscle damage. Has you ever heard of this? Again, Welcome. Kathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2005 Report Share Posted January 14, 2005 Welcome to the group Deborah! 2 of our sons have been diagnosed with CMT recently. And this has been a great site for help and support!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2005 Report Share Posted July 13, 2005 Welcome Deborah, There are many of us out there that were (are) just like your son. Looking back I started having symptoms at @ 16, but did not start to learn that what I was experiencing was not normal until age 22. I am one of 4 girls. None of my sisters have it, my parents were tested and they did not see anything and thank goodness my 3 nieces and my son do not show signs. I know what it is like to feel alone with this disease. No one knew what it was 22 years ago when I was getting diagnosed. I shrugged it off for a long time and just took whatever was dealt to me. I went to 1 support group and it freaked me out! I was so scared and did not really have anyone in my life that understood, so I didn't talk about it. If I fell, I would laugh and say how clumsy I am. I just discovered this group in the last year and WOW, what a relief it is! Sometimes scary reading posts and most times eye opening, enlightenting and most importantly, supportive. He will come around. It is a lot to digest when you are diagnosed at that age, because up until then you had grandious ideas for your future. The great thing is, it can still happen in spite of CMT or any other disability. Jackie Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.