Guest guest Posted January 21, 2004 Report Share Posted January 21, 2004 my name is shannon i live in central kentucky please call me at i recently lost my little girl in may of last year from a mito diesase leighs disease i know alot of people in uk that did alot of work with brandy please call me i can help you and gerogia is so far away we have good docs up here that do alot of research with the doc in georgia so please call me as soon as you can your friend shannon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2004 Report Share Posted January 21, 2004 Cindy, is seen by Dr ph Hersh.He is a geneticist at the Weisskopf Center,University of Louisville. He has been seeing since 1993 when she started having "different" problems that didn't seem to relate to each other,but everyone thought had to have a common cause. After many test here (nothing invasive) urine and blood samples were sent to several different places.These came back as suspicious for Oxphos Disease.Dr Hersh suspected Mito and sent us to Dr Shoffner in Atlanta for a fresh muscle biopsy.This showed Carnitine deficiency and Complex 3 disorder.No gene was identified.Now,due to symptoms, he thinks she has Mito Encephalopathy. I would recommend Dr Hersh for anyone having suppected mito problems.He is the type that wants answers and is willing to send you somewhere else if need be. His number is I hope this helps. ,Mom to Help in Kentucky??? Hi : I have been corresponding with a Mom whose son has a tentative PDD-NOS dx, but is presenting with some mito symptoms. Her choices of places for intensive eval ( insurance) are: UK, UC and UL. She lives in central Ky, and is willing to travel to see any decent specialist for routine care, etc. Do you possibly have any suggestions concerning doctors, evals, etc.? TIA, Cindy -GA Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2004 Report Share Posted January 22, 2004 Thank you very much - I will send her the information ASAP. Have a great day! Cindy-GA Re: Help in Kentucky??? Cindy, is seen by Dr ph Hersh.He is a geneticist at the Weisskopf Center,University of Louisville. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2004 Report Share Posted January 22, 2004 Thank you very much - I will send her the information ASAP. Have a great day! Cindy-GA Re: Help in Kentucky??? Cindy, is seen by Dr ph Hersh.He is a geneticist at the Weisskopf Center,University of Louisville. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2004 Report Share Posted January 22, 2004 Thank you Deb.... I suggested him also! Take care, Cindy-GA Re: Help in Kentucky??? Shoffner...woulnd't be too far...in Georgia...if she wants to go straight for a muscle biopsy I would suggest there. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2004 Report Share Posted January 24, 2004 Now,due to symptoms, he thinks she has Mito Encephalopathy. , What symptoms makes the dr feel it is an encephalopathy? I am curious, because I have recently gotten some of Chelsea's med records and her neuro states he feel she has mito encephalopathy, but he never mentioned it to me. Thanks! e, Chelsea's mom(nonspecific mito) Quote Link to comment Share on other sites More sharing options...
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