Hello @ewillard and welcome to Mayo Connect.

I can certainly understand your discouragement and your "freaking out with how it was supposed to be rare and I have it again" as you said in your post. While I have never had this problem, I have had a rather rare disorder myself with reoccurrences. When a disorder is rare, it seems to create even more anxiety because it is something that only a few people can relate to. Is that the way you feel?

It sounds as if you are getting some good medical attention and I hope that your visit to UCSF is helpful to you. Will you provide an update and let us know how you are doing?