Hi everyone,

Just got back from the CMT specialist and It was a wonderfully productive appointment!

They found my test results from 2003!!!! They had tested for the PMP duplication (1a) and they tested for x in 2003. Both have come back negative! They took blood again today and will be testing for the PMP 22 sequencing (1E) and for MPZ (1B). These are the last 2 tests we can do for now as our government health insurance must approve any further testing as it will have to go the the US. This new testing will take 6 months to get the results (maybe 3 months if I am lucky).

The specialist is setting up an appointment with a child neurologist for my daughter. That is great news!!

Then we went through all my sx and what is CMT related and what is not. Very attentive doctor!!! I have a lot of sx that do not fall under the CMT umbrella. She then examined me and found that my hands are showing some slight muscle loss and some reduction in strength but not much. Just enough that opening cans is difficult. Which it is. My right foot has lost some muscle strength and my arche is VERY high according to her. I always thought that was normal. LOL. No reflex at the ankle. Toes are not moving quite as they are supposed to.

Oh and I had one very bad case of Renauld's going on today at the appointment! My feet were blue and it was travelling up my legs.

After she went over everything she said that I need to get a referral to a rheumy from my GP because there is DEFINATELY something else going on.

That's the appointment in a nutshell. I have to run to work now but will check in later.

Thanks everyone!