I know. I have seen those websites as well. We know there are websites which truly do know and those that do not. I guess that's how misinformation gets out there.

CMT has taken much from me and it still is as it marches (progresses) on. Who knows how a person will end up. No one. It is a scary thing. All you can do is try and deal with the symptoms as they come along - and they do.

I know what you are saying about your legs feeling like dead weight and the stiffness of cement. I have said before that people who do not understand it - well how can they if they haven't walked a mile in the other person's shoes - should strap on some cement blocks and see how that feels to try and walk. I don't do stairs other than three anymore. It just does not work anymore at all. I go down those stairs backwards holding on to handrails as going backwards down the stairs is easier. You can tell when you have overdone.

My Mom used to say that her hands were like a cub bear with boxing gloves on. I am just beginning to find out how she felt. Not my hands so far though. Her feet/legs were affected also but her hands were affected first. And as we know, CMT symptoms vary greatly even within the same family. So true.

I do hope you get to the bottom of what is happening with you. Take care.