Re: good doc

[Guest guest]

Hi,

Are you from Illinois? If so, what part? My family lives Southwest of Chicago.

The ONLY physician I know of that evaluates adults and does fresh muscle

biopsies is Shoffner in Atlanta. There is also one physician at Cleveland

Clinic who follows some adults (Dr. Shields). Cleveland Clinic does fresh

muscle biopsies as well. About a year ago I heard that Dr. Shields practice was

closed to new patients (so you would have to call to see if that has changed).

Dr. Peltier at Froedtert Hospital in Milwaukee has diagnosed and follows a

number of adults with mitochondrial disease. That facility, though, can NOT do

fresh muscle biopsies. Our daughter was evaluated by Dr. Shoffner. He is

superb. The challenge is getting your health insurance to authorize the

visit/studies in Atlanta. There is one physician at Rush and one at

Northwestern who see a small number of adult patients with mitochondrial disease

but everyone I know of who is followed at one of these centers has one of the

" known " , easily diagnosed genetic findings.

< does anyone have any recommendation for a specialist who will listen to me

and work with me? it would also be great if this doctor was somewhere

close to me in illinois. >

Joanne Kocourek (mom to , lies, and )

visit us at: http://www.caringbridge.org/il/annakris

[Guest guest]

Hi! I have been away from the group for a couple of weeks and I know a

lot has happened since I have been gone. Welcome to all the newbies out

there. I noticed that one or more of you are from Illinois? I am from

Iowa, but have relatives in some Chicago suburbs. I have not found a

doctor locally and just went out to Boston to see Dr. Korson. I did see

Dr. Peltier in Milwaukee a couple of years ago. I did have a biopsy done

at the University of Iowa Hospitals and Clinics about 10 years ago, at

age 18. It had to be frozen, but at that time, I don't know how many

biopsies were done fresh like they are now.

I noticed that someone posting has two daughters in their teens. I am

now 28, but started showing signs of mito at 14 and was diagnosed at 18.

I am not sure who posted about this, as I was on no mail and do not have

the energy to go back to read all the posts! :-)

I am glad to hear that those who went to the conference had a good time.

Laurie, sorry you had trouble with your wheelchair getting damaged.

Smiles,

a

On Thu, 23 Jun 2005 07:03:09 -0700 (PDT) Joanne Kocourek

servedogmom@...> writes:

Hi,

Are you from Illinois? If so, what part? My family lives Southwest of

Chicago. The ONLY physician I know of that evaluates adults and does

fresh muscle biopsies is Shoffner in Atlanta. There is also one

physician at Cleveland Clinic who follows some adults (Dr. Shields).

Cleveland Clinic does fresh muscle biopsies as well. About a year ago I

heard that Dr. Shields practice was closed to new patients (so you would

have to call to see if that has changed).

Dr. Peltier at Froedtert Hospital in Milwaukee has diagnosed and

follows a number of adults with mitochondrial disease. That facility,

though, can NOT do fresh muscle biopsies. Our daughter was evaluated by

Dr. Shoffner. He is superb. The challenge is getting your health

insurance to authorize the visit/studies in Atlanta. There is one

physician at Rush and one at Northwestern who see a small number of adult

patients with mitochondrial disease but everyone I know of who is

followed at one of these centers has one of the " known " , easily diagnosed

genetic findings.

< does anyone have any recommendation for a specialist who will listen

to me

and work with me? it would also be great if this doctor was somewhere

close to me in illinois. >

Joanne Kocourek (mom to , lies, and )

visit us at: http://www.caringbridge.org/il/annakris