head to toe CMT treatment centers

[Guest guest]

Ken,

There are several large university/institutitons that do offer care for

CMT persons, such as U of Washington (Seattle), USC + UCLA in Los

Angeles, MGH (in Boston), NYU in New York, Wayne State in Detriot, and

a few others. Some of these are also connected to MDA clinics where

more is known about neuromuscular disorders in general, including CMT.

But as for a real " head to toe " CMT treatment center like what I

envision that you mean (for the entire person/body, etc) we're not

there yet, maybe Mayo in Rochester, Minn. is closest to that. I've

received great reports from CMT persons who have been to Mayo. I'm not

certain about the CMT care at Mayo's satilites in Arizona or Florida.

Haven't heard anything from anyone who's been there.

I had such negative experiences at UCLA and in another " clinic " setting

that my parents felt private docs would be better for me, so that's why

I have quite a collection of them, lol. Seriously, if you do need to go

out of your Kaiser Network, let me know, there are some terrific docs

in Los Angeles who know CMT and I'd be happy to share their names with

you. Feel free to email me privately if I can help at any time. I am

just up 101 in the Santa Barbara County area.

~ Gretchen