FIRST SYMPTOMS WERE TYPICAL PRESENTING SYMPTOMS FOR MS: NUMBNESS AND TINGLING on one side of my body, vision problems, balance problems. etc. When my mother died at 94, the Brain Bank at the U of Maryland did an autopsy looking for the fibers characteristic of Alexander disease;instead, their electron microscope picked up the evidence for Cadasil...my brother's previous dna cadasil test showed some variant genes that the metabolic scientists at OHSU (Oregon Health and Science University) in Portland thought could cause cadasil; so they diagnosed it and the genetics lab at the Univ of Washington reviewed everything and agreed; then NIH confirmed cadasil after examining MRIs and lab results, both for my brother and myself independantly. We had been looking for the cause of our problems for three or fours years and had eliminated MS and most of the leukodystrophies when the Dx was made.
My last neurologist was the only one to question the cadasil Dx since none of my three siblings who also have cadasils, nor I, have signs of strokes nor migraines, which are the main symptoms of the disease. My current neurologist accepts the Dx, however. As did my previous neurologists In Wa.

I think that the only way to Dx the disease, for sure, is through an autopsy or a dna, genetics test.

In short, getting a Dx is often a very long and arduous process, but it started, for me, after MS was ruled out, at the OHSU MS Clinic and an adult onset of an unknown leukodystrophy was strongly suspected. But the first real confirmation came from my mother's autopsy which ironically was arranged, not by an m.d., but by Dr. Albee Messing phd, a research veterinarian at the Univ of Wisc, and one of the leading experts on Alexander disease.