Columbus Ohio doctor request

[Guest guest]

CAN YOU RECOMMEND A DOCTOR IN COLUMBUS, OHIO...I'VE BEEN GOING TO DR.

SAHENK...HAD GENETIC TESTING...BUT SHE'S RELUCTANT TO CALL IT CMT ALTHOUGH I

HAVE ALL THE SYMPTOMS...THANKS!

JIM SILER

[Guest guest]

Jim,

Did Dr. Sahenk say why she is reluctant to call it CMT? How did your

DNA test? Did she only test you for CMT 1A or for all known CMT types?

This is important to know. Your test may have been negative, or inconclusive, in

which case, I'd ask for a re-test. Bear in mind there are 45 or so substypes of

CMT that have been discovered so far. And only about 12 of these have DNA tests

available, so it is possible you have a type of CMT for which there is not a

test yet.

Do you mind if I ask what were your EMG/NCV scores? Have you got family history

of CMT?

There are a few " mimics " of symptoms of CMT in other disorders, i.e.

Frederich's Ataxia and CIDP which is why I ask, and perhaps maybe Dr. Sahenk is

thinking about.

It is also possible Dr. Sahenk doesn't want to committ to offering a

distinct diagnosis. Doctors sometimes do this for fear of lawsuit and she's been

sued once that I know of so far. Has Dr. Sahenk tested you for anything else?

Gretchen