Interesting Visit with Neurologist

[Guest guest]

I recently went for my annual visit to my neurologist Dr. Felice and his group -

PT, OT, Respiratory Therapist, MDA rep, etc...

I get to try AFOs and will be searching the files for more info there. My main

concern is getting some support without losing much in the way of flexibility.

We'll see what I come up with. (I knew I should have worn the grubbier sneakers

with better support to my appointment, instead of the cushy, white ones that are

already giving out!) You can probably tell that I am a bit ambivalent about

this, but I will get around to it.

Anyway, we talked about research and treatment possibilities for CMT in the

future. Once again, he said that as new tests come up, he wants me to have them

to see if we can pinpoint the type of CMT I have. He knows I have a Type 1,

based on the EMG/Nerve Conduction tests, but I came up negative for everything

Athena can test for. Anyway, he mentioned another neuromuscular disease that is

caused by a missing enzyme, and now they are able to treat those patients with

an IV of that enzyme. How cool is that? He believes that there will be a

treatment for at least one type of CMT within the next 5-10 years, and of

course, knowing my type would be important at that point!

Gretchen, I'd like to thank you, and all the people who post and share here at

. I mentioned the group to him and the information that I have gathered

here, and at one point, he said that I was well-informed about CMT. Thanks

everybody!

Namaste,