Re: What would Mayo clinic do for me?

[Guest guest]

Zenaida,

The Mayo Clinic (in Minnesota) is the one I know the most about.

Almost went there once myself. Mayo's are world class/world famous

with outstanding doctors. You would receive excellent diagnostic

strategies from understanding doctors. They would take your family

history, your systems, conduct an EMG/NCV, maybe even an MRI,

depending on what information your docs received at that time, they

may test you further with the CMT DNA Blood test - and may possibly

include a nerve biopsy, this would depend on the doctor's hypothesis

up to this point.

The two best Mayo docs I know at the clinic in Minnesota are Dr.

Dyck and Dr. Klein. Both are leading researchers

and experts in CMT. Perhaps others from in Florida can offer

some names of neurologist at Mayo in ville. Or sdale for

that matter. Here's a few phone numbers for you "

ville (904) 953-2000

Rochester (507) 284-2511

Arizona (480) 301-8000

Link to Mayo CMT info http://www.mayoclinic.com/health/charcot-marie-

tooth-disease/DS00557

Try also http://www.mayo.edu and http://www.mayoclinic.org/

http://en.wikipedia.org/wiki/Mayo_Clinic

MDA is not the same as the Mayo Clinic. MDA is a voluntary health

agency, with about 40 neuromuscular disorders under it's wing, CMT is

but one of them. I'm so sorry no one called you back. You should not

have had to wait this long; either call them now, if that's where you

wish to go and find out when the next clinic visit is. My own

personal experience was not positive with them, and the only reason I

didn't go to Mayo at the time was it was my senior year of high

school and I didn't want to leave school and all the events, plus my

part time job and boyfriend. My parents found me a wonderful

neurologist in private practice at that time who handled everything

so beautifully and needed no further tests.

I hope this is helpful.

~ Gretcheen

Link to MDA is http://www.mdausa.org

[Guest guest]

Zenaida,

If you have an opportunity to go to Mayo Clinic, by all means GO! By

" opportunity, " I mean your health insurance will pay for it or you can afford

it. I was at Mayo in Minnesota last month for a non-CMT related issue and found

it to be the single best medical experience I have ever experienced. The level

of professionalism, knowledge, expertise, and compassion were outstanding. I

can only imagine the same would be true for the CMT doctors.

Best of luck,

[Guest guest]

It sounds good to be true!!! Your reply about Mayo was so positive. I felt

strongly that I ought to go and see the CMT doctors but at ville,

Florida? Will it still be the same things for the best doctors out there . I

hope so. I live in Port St which is about two and half hours away from

ville. I will see if the Blue Cross nor Medicare will cover full the

expenses. I would like to know if I do have CMT and what type of CMT do I have.

Thanks for the positive response. I appreciated it very much.

Keep in touch,

Zenaida Astone

[Guest guest]

Wow!!! That's something I would love to hear that so positive. Yes, it is

helpful. I will do that on my own and Do you think the Blue Cross or Medicare

will cover full of the expenses???. I am hoping if anyone in is from

FLorida who is able to help me out which Doctor should I seek.

Thanks for the information. If I have any questions. I will email you back.

ville is two and half away from my home. MDA is about 30 minutes away.

So I felt strongly that Mayo Clinic is one for me to go. I hardly can't wait

to call sooner .

Thanks again,

Zenaida Astone