Where should I go for a mito doctor?
| Posted: March 2nd 2010 | |
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cellolover |
Print Hi! So, I am moving in a few months and I am trying to figure out where I should go for a mito doctor and I wanted some opinions from patients and caretakers. I will be 30 minutes from Grand Rapids, MI, 2 hours 30 minutes from Chicago, IL, and a little over 5 hours from Cleveland. I am just not sure where to go. Grand Rapids would be ideal and I have heard rumors that there are doctors there, but I can't find names. I don't really know who is in Chicago. That would still be a hard trip for me, but doable. It also has the benefit of being where a sister of mine lives! I know Cleveland is supposed to be great, but making a trip that long is hard for me. A big thing I want to find is a doctor who is willing to answer my questions. If a doctor prescribes a medicine but refuses to tell me why then I have no defense when other doctors want to take me off it or insurance refuses to pay for it. Anyway, thoughts and experiences of both the positive and negative kind would be much appreciated! __________________
Rachel- I have abnormalities in Complex I,II, and V. I also married a wonderful man on June 5, 2010. |
Hi Rachel, I am sorry you
Submitted by arktjk on Thu, 03/04/2010 - 4:04pm.
Major centers for
Submitted by Cristy Balcells on Fri, 03/05/2010 - 2:23pm.
Major centers for mitochondrial disease
I think people ask about this a lot, so thought it would be helpful to list the major centers that have "expertise" in mitochondrial disease. If you know of others, please post! (in no particular order) Tufts Medical Center/Floating Hospital for Children (Dr. Korston or Dr. Jethva) Massachusetts General Hospital (Dr. Sims, Dr. Favero, Dr. Holtzman) Cleveland Clinic (Dr. Cohen, Dr. Natowitcz, Dr. Parikh) University of California San Diego (Dr. Haas and colleagues) Virtual Medical Practice, Atlanta (Dr. Kendall) Columbia University (Dr. Hirauno, Dr. DiMauro, colleagues) University of Texas-Houston (Dr. Mary Koenig)
Cristy Balcells RN MSN
Executive Director
Add Dr Wendy Peltier to the
Submitted by mitoscottie on Sun, 03/07/2010 - 5:33pm.
Add Dr Wendy Peltier to the list of "mito-savvy" doctors. She is very approachable and is willing to work with other specialists and your PCP. She is at the Neurology Department of the Medical College of Wisconsin Froedtert in Milwaukee. She sees adult patients, which is a real bonus!
Jean Shepherd
British Columbia, Canada
Thanks ladies! You have
Submitted by cellolover on Sun, 03/07/2010 - 8:33pm.
Rachel- I have abnormalities in Complex I,II, and V. I also married a wonderful man on June 5, 2010.