Welcome Ken

[Guest guest]

Welcome Ken and congratulations on beating the tumour. Thanks too for

your introduction. I was diagnosed with CMT when I was 10. Have not

had DNA tests and no CMT in the family either. There are so many

kinds of CMT for which there is not a DNA test for - yet. (like most

of the Type 2's). So, possibly your " negative results " just are

negative for the Type 1's.

It baffles me how people go through so much bs to get a diagnosis. I

was diagnosed by walking through the hallways of an orthopedist's

office - he knew right away I had CMT - of course that was 1962, and

no tests then. I have had all kinds of tests since, lol, even my

EMG/NCV results are " normal " .

Just got out there and got into LIFE - and I'm still at it.

Again, welcome to .

Gretchen/ Founder

[Guest guest]

Hi Ken:

It sounds like you may have CMT of some sort. Almost all of us are different in

its development. Mine became notiiceable when I was just 5 or 6 and has been

progressing slowly ever since.

Fortunately we can adapt as things get harder to do-- buttoning, zippers,

snappers etc.

It is throughout my family and we were aware of it but did not know its name.

High arches-mine would not fit into a leather shoe until surgery was done. I

have a bunch of hammer toes & " claw-like " fingers.I retired from teaching 15 yrs

ago after 43 yrs. I'm now 79 & my balance is poor, my hearing is going bad,

eysite not too good-- don't know if CMT has done all this, but I'll hang in

there.

It sounds as if you have been blessed with a lot of good news lately & I know

you will be able to handle CMT.

Blessings & best regards to you & all,

in the land of the Illini

[Guest guest]

Ken;

Welcome aboard. I also was diagnosed at Kaiser. Which Kaiser are you going to?

I started at Santa Clara but ended up in Fremont before I found a neurologists

that recognized CMT.

Fred