Children with CMT - Re: Carley

[Guest guest]

Hi Mike:

We had the same concerns with Gavin re how low his NCV was, less than half what

is normal for his age. In fact after the very low NCV the doctors stopped the

test and didn't to an EMG because they were so sure of what he had.

Our neurologist told us that there is not a strict one to one correlation

between NCV and severity/progression of symptoms. Other factors also come into

play (nerves are a multicomponent unit with a complex interplay)...for example

although Gavin does have CMT 1A, he shows some symptoms that are more typical of

axonal or type 2 CMT, which doesn't usually have markedly lowered NCV.

How low was her NCV? Does she have foot drop yet?

We can't really be sure what Gav's progression will be, despite early onset (he

basically had signs from the time he started to walk at 14 months,although they

were ascribed at the time to a middle ear imbalance), and low NCV. I have heard

of several people who were told they would be wheelchair bound and never have

been.

The waiting really is the hardest part at this point. If you'd like, email me

directly at pehrsson@...

Take care

Sally