Midwest Mito docs

November 1, 2005

,

I agree with you that there are no mito experts nearby. I live

in Iowa, but have traveled to Milwaukee before to try to find a doctor

who knew something about mito. I saw Dr. Peltier and she confirmed my

mito diagnosis, but I only had the one visit due to insurance. My

insurance feels I should be going to the University of Iowa Hospitals and

Clinics, as they have a great reputation in the country. They are good,

but not on mito. I am now traveling out to Boston to be seen by doctors

out there every 6 months. It will be my second time going, in December.

I do hope that you can find someone doctor around here to help.

Smiles,

a

There are no mito experts anywhere nearby. My son's

labs are unusual even for mito. He has problems in

copper metabolism, for example. But his problems are

exactly the opposite of known disorders. We have been

told that his condition is incompatible with life but

then given no ideas or suggestions about where to go

or what to do.

We see subspecialists in Wisconsin. There is a good

FOD person there but he isn't anyone we want to see.

He has refused to recognize positive fresh muslce

biopies for some patients we know. What can he do for

us? We will wait for Whiteman because we have no choice.

Mom to the two best kids in the world!

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