I am sorry to hear about your Dx of cadasil. I found out when the Univ of Maryland Brain Bank did an autopsy on my mother. The geneticists at OHSU in Portland then concluded that I and my brother had a variant of Cadasil. The genetic lab at the U of Wash came to the same conclusion. My brother I then sent our medical info to NIH, and they agreed..so I accepted the Dx, however, my current neurologist does not. She says I show no signs of stroke and I do not have migranes, so she thinks it is some other type of leukodystrophy. My brother has an appointment in Jan with a supposed Cadasil expert at the Mayo Clinic, and I am anxious to hear what he learns.
Since the DNA test for Cadsail is not covered by medicare I decided not to pay. I had other things to spend the money on. Have you had the test?
How did they determine that you have cadasil?
Good luck to you.
"Together we have hope" is a website devoted to cadasil. The site maintain a list of doctors who have some experience with the disease. But I always felt that anyone who has experience with vascular dementia, already knows as much as anybody can expect and since there are no treatments for disease, all you can do is get someone to treat the symptoms anyway, and the symptoms are common neurological symptoms...so why go looking for someone who knows the disease. It is a genetic disease, and neurologists don't get much, in any, genetic education.