introduction/need help

[Guest guest]

Hi everyone! I am new to this group and just wanted to share my

story to see if anyone could help me. I will admit that I have not

read or know alot about CMT. I am educating myself as we speak.

Anyway, this runs on my maternal side. My grandmother, great

grandmother, mother, 1 aunt and 1 uncle have or had this. It started

at 13, with a limp, over the years my legs have gotten worse. I am

now 29 and have no balance at all. Zip, zilch, none. my legs fall

asleep easy and I fall all of the time. Showers are harder for me as

is any wet floor. Only 3 years ago, I was walking 2 miles a day and

now can barely get to the mailbox. My mother is 50 and only recently

has lost her balance, my cousin is 30 and on disability. I went to

Disney World last week and had to sit the whole time, I swear my

legs just stopped working. I have had back problems and the Doc

pointed out that my whole body is shifting to my left side, I am now

experiencing alot of pain in my left hip, I am assuming this is from

the shift. I have back problems because I am out of line. I am

uninsured and am on the waiting list at the MDA for treatment. I did

go see a foot Doctor, he did x-rays but did not treat CMT, I was

misinformed and was told he was familiar with this disorder. He did

show me the x-ray of my feet and there seems to be " cloud " over the

area. He charged me $500 and I still have no answers. He made the

diagnosis, which is what I needed for MDA, but other than that knew

nothing. I asked him about a brace and he said it would not help me

and refused to write a script for one. I guess I am just searching

for advice here. I am so depressed about this and never realized

that I would not be able to walk at such a young age. What can I do??