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nire (@nire)

Autoimmune Encephalitis/ Autoimmune Dementia

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

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@nire

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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Replies to "Thanks for responding John. No, my son is on nothing except thyroid replacement hormone. The frustrating..."

I'm hoping @techi will provide some suggestions for you. I also saw a post by @valm that mentioned a Facebook group – International Autoimmune Encephalitis Society that is really great at helping patients. He mentioned in his post that they also have a website. Here is their website if you want to check it out –
https://autoimmune-encephalitis.org/

I hope you can find some anwers for your son. I do understand what thyroid issues can do, but it's goes way past a thyroid issue most doctors don't even look at. I'm in remission with graves diease, but I'm still working on my issues, I did find a functional D.O/holistic doctor that took my insurance, test that's helped me was a 24 hour salvia cortisol test, wondering have they checked him for Addison because you said he did better on steroids, then she had me do a genvoa nateval test this is a good test to show imbalances in your system and I did my own DNA and upload it to genetic genie, promethease but there are other you can use, this helped give me a clue to even where to start looking. Sometimes they think just remove the thyroid issue solved.

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