After more than six years of many neurologists and geneticists and researchers ( metabolic and others) and the many tests each of them performed, I often felt like you, but looking back on the whole experience, I am grateful to all of them.

I am especially grateful for the testing and help given to me by a research veterinarian who led the way to discovering what disease I have. I learned that you never know what is going to be important. I also learned that all of these guys know a lot more than I do. I got treated well. And am grateful.

Hopefully, you'll be able to look back like I do, and appreciate the testing. Some day I'd like to list all of the diseases that I got tested for and did not have. The veterinarian, for instance, eliminated my having an adult onset Alexander disease so I am not the 31st person in the world, during the last 50 years, to get it..nor does my two brothers and older sister have it. Instead we are among some 400 families to have a vascular leukodystrophy, inherited from my mother who lived for 94 years.

It took everyone a long time to figure out what we had and a lot of tests. But that's the way medicine works: to eliminate (or confirm) the most likely of all the possible diseases, and do the same again and again until finally there is a confirmation...at which point, often there is no treatment available because the disease is an orphan disease, and does not warrant anyone trying to find a treatment to say nothing of a cure.