Information Needed/for Sharon

[Guest guest]

Sharon?

I assume that his pediatrician would refer you. Shriners (children

only) and MDA also help clients who have CMT. Some MDA clinics

require you to have already been diagnosed, but others cover

diagnosing, too. Seems to vary a lot. I had good luck being sent to

a knowledgable neurologist, but some of them don't even recognize

or understand CMT, so it has taken some CMTers years to be diagnosed

(and some are still searching).

The DNA test is only good for a FEW of the 25 or more types there

are. Often it can just tell you which types you DON'T have.

The twitching sensation is fairly common with CMTers. Burning and

freezing are both common. For me, the burning was much easier to

tolerate than the freezing, even though I much prefer cool weather

to hot. We vary a lot with regard to symptoms, even within a family.

We also vary a lot with regard to what helps. Trial and error may be

necessary to find out what works for you or your son.

Good luck. Keep asking questions and you'll likely receive various

responses. Our mantra seems to be: " We Vary a LOT " .

Kat

Seattle USA