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nire (@nire)

Autoimmune Encephalitis/ Autoimmune Dementia

Autoimmune Diseases | Last Active: Dec 17, 2019 | Replies (7)

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@johnbishop

@nire I know it has to be frustrating knowing something is wrong but not being able to find a cause and a treatment to help. Lisa @techi may have some thoughts to share as I think she has faced similar challenges.

Is your son on any medications for his diagnosis? Sometimes the medications can have side effects that are overlooked.

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Replies to "@nire I know it has to be frustrating knowing something is wrong but not being able..."

Thanks for responding John. No, my son is on nothing except thyroid replacement hormone.
The frustrating part of all this is that after spending only one hour with my son, on only one occasion, Mayo has decided that he is depressed. After that, every symptom that he has had, was attributed to depression. There is no way sudden onset of psychosis, movement disorder, falling down, cognitive, strange facial expressions, memory, stuttering, Tourette’s and everything else is because of depression. Those are the very real signs of an autoimmune disorder. Aside from the fact that he actually has an antibody and got so much better after thyroid removal and being put on thyroid hormone. In the beginning, Mayo’s own possible diagnosis was a 46% chance of him having AE after finding those antibodies in my son, even without all the point blank symptoms! Another strange thing that happened, was after thyroid surgery, after I told his neurologist and endocrinologist how much better he was getting, not one of them was interested in seeing him again. I think that they didn’t believe me when I told them he got better and I don’t think they believed me when I told them about his symptoms. But every single person that knows him and loves him, can not believe the huge difference in him since he got surgery! Even his dad, that didn’t think I should make the decision for him to get his thyroid out, is so happy now that I made that decision. They also can’t believe that he has been left still unwell with his personality change. I begged all of them to try the intravenous steroids, which is a very normal action for the doctors to take under these circumstances, because if they see even slight improvement after steroid treatment, then they know it’s AE, but they wouldn’t even try it. I had reason to believe the steroids would work, because while he was so sick, his local doctor put him on 8 days of a very strong oral steroids for a bad chest infection and we saw a light come back on in our son. It didn’t last long, only a few days, but there was definitely an improvement. His Mayo neurologist told me I didn’t see anything because oral steroids would not show it. My local doctor said that he was on such a large dose, that she thinks we did see a difference.

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