My son (Tom) has the "official" diagnosis. Mom carries the gene (check) Tom as the symptoms (check).
Now, the idea is to stop it where it is. Tom's vision is 20/40 in his right eye and 20/400 in his left eye. There is a blind spot in each eye that (at this point) do not overlap.
He was at college in Marquette when this started, and the closest neuro-ophthalmologist is at the University of Wisconsin in Milwaukee - Wednesday I drove to Marquette, Thursday we drove (I drove, Tom rode) to Milwaukee and then drove on to Buffalo Grove to spend a little time with Aunt Deb. Friday, we went back to Marquette and yesterday I drove home. I'm pretty road-weary at this point.
It was the providence of God that we were sent there (first choice was Mayo Clinic, but there were no appointments) because the doctor in Milwaukee suggested an experimental treatment (the "magic light bulb".) Near-infrared light has been used in a colony in Brazil that has a very high incidence of Leber's with promising results. Tom is NOT in a controlled blind study - that means that he can continue to use all of the supplements that are also suggested.
The list of supplements is rather impressive and I learned a few things about vitamins that I didn't know. More research required. I'm making a page on this site so I can keep track of what he's taking and how much (since I'm buying)
If his vision stays where it is now, he'll be okay.