maize Posted December 12, 2017 Share Posted December 12, 2017 What kind of doctor would I need if I want to thoroughly investigate the possibility of mitochondrial disease? The following list of symptoms all apply to the person in question, and I just discovered them together on a list of symptoms of mitochondrial disease: visual problems hearing problems kidney disease gastrointestinal disorders anxiety disorders chronic fatigue syndrome problems with coordination muscle quiver Quote Link to comment Share on other sites More sharing options...
sassenach Posted December 12, 2017 Share Posted December 12, 2017 I don't really know, but here's a resource I found http://www.umdf.org/find-a-doctor/ 1 Quote Link to comment Share on other sites More sharing options...
sassenach Posted December 12, 2017 Share Posted December 12, 2017 http://www.umdf.org/what-is-mitochondrial-disease/getting-a-diagnosis/ Quote Link to comment Share on other sites More sharing options...
Hilltopmom Posted December 12, 2017 Share Posted December 12, 2017 Neurology and genetics first. Then The Mito drs at the Cleveland Clinic was where we went. https://my.clevelandclinic.org/health/diseases/17237-mitochondrial-disease Also, the Mitochondrial Disease Foundation should have a list of drs. I’d guess. I’ll 2 Quote Link to comment Share on other sites More sharing options...
Hilltopmom Posted December 12, 2017 Share Posted December 12, 2017 Boston Childrens hospital also has a mito specialist. Quote Link to comment Share on other sites More sharing options...
sassenach Posted December 12, 2017 Share Posted December 12, 2017 Boston Childrens hospital also has a mito specialist. Is this the same hospital that took that young girl away from her parents? Quote Link to comment Share on other sites More sharing options...
Hilltopmom Posted December 12, 2017 Share Posted December 12, 2017 Is this the same hospital that took that young girl away from her parents? Well yes, but that has sadly happened at other places too. They also have a very good mito program that several of my friends have had their mito kids treated at and kept them alive for many years longer than anyone expected, so there’s that. 1 Quote Link to comment Share on other sites More sharing options...
scrapbookbuzz Posted December 12, 2017 Share Posted December 12, 2017 (edited) You may want to contact this gal as she has been through it all when it comes to mitochondrial disease. (edited to correct link) Edited December 12, 2017 by scrapbookbuzz 1 Quote Link to comment Share on other sites More sharing options...
Crimson Wife Posted December 12, 2017 Share Posted December 12, 2017 Neurologist for a referral to genetics since most geneticists are so swamped they won't accept self-referrals even if the insurance doesn't require one. FWIW, I always suspected my SN child had mito until we had the whole exome sequencing done that included mtDNA sequencing. Turns out she has a rare neurological syndrome that is due to a chromosomal mutation and her mitochondria are fine. 1 Quote Link to comment Share on other sites More sharing options...
Ottakee Posted December 12, 2017 Share Posted December 12, 2017 Neurology did ours. I have heard Cleveland is great. Our doctor locally was excellent and trained with the top peds mito specialist in the US for a while. We also saw Dr. Haq at Detroit Children's and he knows his stuff. He can be hard to understand as he is brilliant and doesn't always speak in language the rest of us can understand but he is good at what he does/knows. 1 Quote Link to comment Share on other sites More sharing options...
PeterPan Posted December 13, 2017 Share Posted December 13, 2017 Are they finally doing bloodwork for mito? When I looked into it a few years ago, mainly they were talking about biopsies and microscopic study of live tissue. 1 Quote Link to comment Share on other sites More sharing options...
Ottakee Posted December 13, 2017 Share Posted December 13, 2017 Are they finally doing bloodwork for mito? When I looked into it a few years ago, mainly they were talking about biopsies and microscopic study of live tissue. YES they are. My older daughter had to have the muscle biopsy but younger DD only did lots of tubes of blood. 2 Quote Link to comment Share on other sites More sharing options...
Crimson Wife Posted December 13, 2017 Share Posted December 13, 2017 Yes, we passed on doing the muscle biopsy in 2012 since it was so invasive but were able to have the mtDNA sequenced through a blood test. Extraordinarily expensive, though, if insurance won’t cover the cost. Sent from my iPhone using Tapatalk 2 Quote Link to comment Share on other sites More sharing options...
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