After my appointment with Dr. Shoffner in March '11, he planned on doing genetic testing to find out what gene defect was causing my mito. That search is still kind of ongoing and here's why... I finally received the results of that test last December about a week before my appt. with my local geneticist. That was lucky because he was able to discuss the results with me so I didn't have to return to Atlanta to Dr. Shoffner's office to discuss them. The genetic defect is in my mitochondrial dna and it usually causes LHON (it's in the list of mito diseases). However, I don't have any of the primary symptoms of LHON. I have since been to another mito specialist and she thinks that the defect that was found is not the primary cause of my mito. It is possible, per the geneticist here in town (not a mito specialist), that I just have different symptoms than most patients with LHON.
This is my life now.... take it or leave it. (Don't tempt me.. because there are definitely days in which I'd leave it.)