More prominent proximal wkness w/ CMT 1A

[Guest guest]

Hello, everyone. My son, Sully, who is 10, had his PT eval today. He

was officially diagnosed over the summer with CMT 1A. I have posted

recently about my issues with proximal weakness (and tremors) that have

started over the past 5 years (after distal weakness was well underway!)

I am 41 years old. Sully seems to have begun with proximal weakness in

shoulders and hips, and even now, his hip flexors are weaker than his

ankle dorsiflexion. I asked if his tight hamstrings were contributing

to his weak hips, and the PT thought it was partly that, and partly

disease process. His shoulders are more troublesome than his hips as he

has winging scapulas. Anyway, I was wondering 2 things. Anyone else

have history of starting with proximal weakness?? Seems like a

different disease to me, but he was diagnosed with NCV (and I had

genetic confirmation for CMT 1 A.) And, wondering about parent's

experiences with how well children come through puberty with CMT, and

boys vs. girls.

My thanks to everyone who shares their information on . It is

amazing how much we can learn from each other. Take care!

Mandy