Any mito physicians at CCF taking new patients?

September 7, 2004

A family that we know has a 23 yr old daughter who has been ill for several yrs with an unknown ailment. Recently her carnitine levels came back low and now her physican is wanting to send her to CCF. The doc. called today wanting the name and number of who I see at CCF. I know that Dr. Cohen isn't taking new patients, or at least wouldn't take someone 23 I don't think. Do you know if Dr. Shields is taking new patients? Or are there any others at CCF who treat mito/metabolic diseases? Thanks for your help.

September 7, 2004

I have actually asked Dr. Cohen about this, for myself. We both agree that I most likely have a mild mito, but it is far from serious. He told me that there was nobody at CCF who even sees adults.

Also I believe Dawn brought up the MDA clinic, which is a great idea. If she is in Cleveland the closest clinic is at Metro Hospital, in Cleveland. The MDA doc openly admits he knows very little about mito, but he does all of his consulting directly with Cohen. It may be a sneaky way of not seeing Cohen but picking his brain a little.

If you do find someone in Cleveland, please let me know. I am interested in answering a lot of my very unusual medical history.

September 7, 2004

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> ,

I don't know if any docs at CCF for adults. the ones I have heard

of are not very good (tsao being one of them). Can she make an appt

at the MDA clinic (I think there is one in Youngstown (if she is

local). If she has dysautonomia she can be seen by Dr. Chelimsky who

is doing alot of autonomic testing /reasearch. He is at University

hospital of cleveland. Not really good with treatment afterward

though. He is the doc who evaluated me and has let me drop. Seeing

him this Friday to ask for more help.

Dawn

September 7, 2004

and Dawn,

Thank you both but this young woman lives here in KY in my small town or nowhere. I'm not sure where to direct them.

September 8, 2004

Krystena-

Thank you! We are in Owensboro, which is about 3-3 1/2 hrs from UK. I will certainly pass along the name.

Thanks again,

September 8, 2004

,

what city does she live in?

We are in Mt. Sterling.

There is a BRAND new geneticist at University of Kentucky. Her name is Caroline Bay. The boys cardiologist wanted us to go see her. I would but I feel we are already in good hands at Mayo. The cardiologist would like us to have someone local too, so maybe at some point, I'd consider seeing her. She specializes in metabolic diseases. Actually, her office called and left me a message for records request, etc.. I just never called back. We are consumed with too many doctors as it is. Know what I mean? So, maybe that's worth a shot.