LP is negative. MRI shows troubled spots. The second largest group of people with damaged myelin are the undiagnosed Leukos. I've just applied to two research groups who are investigating the genetic causes of undiagnosed leukodystrophies, one at a children's hospital in Washington D.C., the other a study by the National Institute of Health. This is coming after a six year search for a dx, with all sorts of testing, most of which ruled out the known leukos. It might be nice to finally have a name to attach to what I have, but that's all I'll get. There are no medications, no cures. But, to look on the bright side of things, there are also no practicing neurologists to tell me what to do. They just look perplexed and make guesses. Then ask me. I get to be the expert, for once. And having been expelled from nursery school....well, that's a power trip, for sure.
The other thing neurologists do is say, "well, the only time I see that much damage (while looking at my MRI) is on comatose patients." And I am thinking I better pay more attention to the guys in the waiting room