CMTUS

[Guest guest]

Just found your site -- what a nice surprise. I was looking for a support group

and decided to check and see if there was one for CMT -- what a nice surprise.

I thought CMTUS stood for CMT us -- as in us, the people with CMT -- but, I like

the CMT Earth as well.

CMT (in my living family) starts with my Grandmother (walker 50, wheel chair

65), my two uncles have it & my mom, three of my four sisters have it & I have

it. So much for fifty/fifty chance of passing it on -- it hasn't worked that

way in my family for a few generations.

I have three sons (one I gave up for adoptions -- but have contact with -- he is

25 on March 16) and I have a grandson & granddaughter. It remains to be seen

how my children & grandchildren will fair -- I would love to find out none of

them have it.

I found out I had CMT last year (Mar 99 -- genetic testing) and went to a

neurologist last week -- as if i need to do that. He confirmed my diagnosis and

told me my response was in the 25 range (50% below normal -- anyone below 40 is

suspected of having CMT).

I went for the blood test with three of my sisters after my older sister found

out she had CMT and that pulled the family history together. So far, I'm one of

the lucky ones -- you can't tell I have the duplication of a gene by looking at

me and I feel pretty normal (most days tehe:-))). So, I get to deal with having

CMT before I get annoyed disease. I don't have to work with doctors to find out

what these symtoms are all about -- I already know I have CMT. And I will be

aware that I need to pay attention -- recognizing what I can do something about

& what I can't do anything about & pace myself.

So far my CMT life is simple. Oh ya, and I can pray for lot of solutions for my

generation and those who will come into CMT.

Natilee