How can I get my health care team to start listening?

[Guest guest]

Hi all,

I just had to say that when Gretchen said:

> I feel it is extremely important for everyone to understand that CMT

> manifests itself differently in all of us, and depends on our own

> unique genetic code. It is also important to know that NO DOCTOR OR

> OTHER PERSON can " predict " what a person's CMT will be like in the

> future.

She was 100% correct! I complained of feet pain at age 5 but had a good 10

years pain free and very active. Yes I had " tired " feet a lot and off and on

some days they were really tired but for 10 years I was great. I was diagnosed

in January 2005 and it's been hitting me physically hard since then.

I'm working with a podiatrist to figure out why I'm having so much pain because

I'm really thinking it's my orthotics and gait that is causing the pain and not

so much the CMT. I still have burning, cold icy feet and RLS but I can deal

with all of that.

It's the fatigue that I have the worst time with. But my point is if you saw me

4 years ago I would have told you I felt great and the idea of anything wrong

with me was ridiculous. Four years later I am the complete opposite but trying

to make changes to get me back in the swing of things.

If I could just get my health care team to start listening. Why do they think

they know my body better than I do?

Elaina/NY