Badges (1)

About

Member has chosen to not make this information public.

Groups (1)

Pages

Member not yet following any Pages.

Posts (1)

Oct 30, 2019 · Autoimmune encephalopathy anyone? in Autoimmune Diseases

@tanap1 Your challenge in getting this diagnosis is certainly a reality for many who are afflicted with it. My mom passed away several years ago however, she spent a good 5 years struggling with symptoms (mood changes, impulsivity, gait changes, memory changes, etc.) that were chalked up to severe relapse of her depression. She was even hospitalized for this and put on 2 additional medications, one fore sleep – which was prescribed at the highest level. I remember thinking she was a zombie with all the meds. Fortunately, I worked with a brilliant neurologist who had experience with autoimmune encephalopathy and I was able to talk with him and explain that I did not think my mom's illness was her depression. Our family has a large autoimmune history and I was concerned that there was more to this than depression and I hated seeing her drugged especially if this was something more. He agreed to see her and began by ruling out other causes of the symptoms and weaning her off her medications. He did discover she had pernicious anemia and treated her for it. Some symptoms got better however, others remained. About 6 months after he became her provider, he shared that he had a theory that she may have autoimmune encephalopathy and to confirm it he would treat her with high dose IV steroids. We agreed to this and the treatment brought my mom back to her "normal" state. The neurologist did explain some people never relapse while others do. My mom did relapse and was treated on 2 additional occasions. Keep advocating for yourself! I hope the neuro-immunologist will help provide some answers and guidance on treatment for you. Best wishes to you!