I learned that the tests for MS are important. A radiologists read my MRI as MS. The spinal tab, however, was clean. My neurologist said she thought I had damages where MS does not go. She named some unpronounceable diseases, then said she had never see one of them. I asked if any of them were treatable, she said no, and I replied, well, let's just call it MS. It turned out she was right. I have one of the unpronounceable diseases. In fact, now I belong to the second largest group of people with myelin damages. The first, of course is people with MS. The bad news is that all the members of our second group are all undiagnosed. In 1997, however, NIH opened a research project to test us undiagnosed and determine what we have. They wanted 400 patients, and ten years later they are still accepting patients for testing... I guess we truly have a rare disease.
Unfortunately, if they cannot Dx what someone has, they want to do brain tissue sampling via open brain surgery.