I am sorry you have to go through this, too. But I feel lucky that we both have a diagnosis, since a lot of physicians don't seem to know about SREAT. I think there are a lot of people who just die from this disease because they are not diagnosed correctly. I hope you have someone to help you through your ordeal.
My husband is in the third month of steroid reduction and seems to be doing well. He is seeing a neurologist in San Francisco at the U.S. Veteran's hospital, who has had some experience with these patients. I am very glad to know about Azathioprin, and will inform my husband, Chuck, about this drug so that he can ask his doctor about it. Thank you so much.
May I ask how your disease presented itself; did you have hallucinations while you were in the hospital? How long were you in the hospital and how long was it before you were diagnosed? What were your steroid side-effects? Is your condition considered chronic?
I know I have asked a lot of questions and I would be happy to answer any of yours. I am grateful that you replied to my post. You are the first one who has done so in five months.