Recently diagnosed with extremely rare Susac Syndrome and unable to find ANYPLACE that knows treatment protocol. Local neurologist seems to have me on very conservative steroid regimenj, but from limited information, I understand that immediate and aggressive treatment is vital. Thought Vanderbilt was going to be my go to, but hearing much about lack of knowledge there on even more basic vascular/neurological issues. I am VERY scared! How do I get into a treatment program as quickly as possible?