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Supposedly being the key word!Here's a thread on Dr. Kendall in Atlanta. She's a geneticist who supposedly specialized in mito disease.
http://forums.phoenixrising.me/index.php?threads/dr-fran-kendall.29278/
I havent thou I suspect I do have some mito issue probably inherited due to various issues in my family eg my father had a hearing issue as a boy etc
Mitochondria are inherited from the mother. The sperm cell looses its tail (where its mitochondria are) before conception.
In genetics, paternal mtDNA transmission and paternal mtDNA inheritance refer to the incidence of mitochondrial DNA (mtDNA) being passed from a father to his offspring.
It doesn't sound like it was a worthwhile endeavor to see Dr. Kendall in Atlanta.Supposedly being the key word!
Can you please keep us posted on your results, thanks!I contacted Robert Naviaux @ UCSD. He wasn't able to help. It seems he is more research oriented and deals with "single" gene defects vs complex epigenetic disease. I was able to contact Duke specialist who will be ordering mitochondrial screening blood and urine tests.
In general, it is very difficult to find "appropriate" specialist. I suspect others have had similar experiences and it reflects the fragmented nature of our healthcare system.
On a positive note, a mitochondrial genetic specialist at Mass General is optimistic that medical advances in this field are accelerating and hopefully it will lead to improved diagnostic and treatment capabilities.
So the journey continues... one that requires patience, persistence, and perseverance.
Ironically, I have been reading several books on running ultra marathons.
"The best way out is always through". - Robert Frost.
Hey RYO,I was wondering if you were able to get any answers to your problems. I am going through a similar thing right now and it seems like there is some type of muscle dystrophy going on with me, at least thats what the head of the EMG department tells me. He even mentioned Pompe's disease. I saw Kendall and she says it looks like I have mitochondrial myopathy/disease and will need further genetic testing.
What sort of metabolic screening tests did you do?
Do you have muscle problems too?
No aggravation after antibiotic course.@RYO , did you had aggravation after an antibiotic course?
How about your blood potassium, do you have aggravation of your muscle symptoms when your blood potassium vary?