Autoimmune Encephalitis/ Autoimmune Dementia

Posted by nire @nire, Dec 13, 2019

Has anyone on here been treated at Mayo Florida for either autoimmune dementia or autoimmune encephalitis?
My 46 year old son went there for almost 1 year with debilitating symptoms and also has the Ganglionic AChR antibodies, some things showing up in brain MRI that are not right for his age, and many irregularities in some bloodwork. Because one psychiatrist saw him for 1 hour, one time, we were told he had depression. I’m still in shock that was their total answer!
We went to Mayo Florida last year because my 46 year old son started acting strange, he would do things like wake up at 3am and go swimming in the ocean. He knew that something was wrong with him and his thinking because he kept forgetting things. Finally he forgot how to do his usual work, he couldn’t remember things like how to play the guitar, he was making decisions that didn’t make sense. After the local doctors couldn’t figure it out, we went to Mayo Florida. He saw a neurologist and endocrinologist, they did tests and found that he had the Ganglionic AChR antibodies, some T2 intensities on MRI, and some bloodwork that was off. The report came back that he had a 46% chance of having autoimmune dementia and 30% chance of having cancer. Long story short, they did PET scan for cancer and couldn’t find any. Sent him to a psychiatrist for 1 hour, one time. Psych doc says he has depression and after that, no one cared that he was having so many autoimmune symptoms, they chocked everything up to depression.
They kept telling me that he needed to be on depression meds and all his many symptoms were being caused by depression. I had never heard of depression causing a person to have ganglionic Achr antibodies or bloodwork that was way off (like when his IGF1 was 50 to 100 points above the highest reference range…in 5 separate tests, for over a year) I didn’t know depression could cause your knee to buckle and make you fall down. Even when I told them he was having major speech problems, personality differences, strange facial expressions, major cognitive and memory problems, still they kept insisting that he was depressed and they were not happy that I wanted to know real answers and would not put him on depression meds for something obviously not depression!
His neurologist and endocrinologist saw him in the very beginning but after that, they just did tests that they posted on the portal. I had to call and write to get any response. I had suspected his thyroid since the beginning because he has had thyroid issues all his life, but all the doctors kept telling me his thyroid was fine aside from a few nodules. Finally, after a needle biopsy on his thyroid that said possible cancer, I insisted on having his thyroid taken out. Mayo fought me on this but since it was possible cancer, it was our choice. 8 days after thyroid removal and replacement meds, we all started noticing a big difference in him. Over the next 6 weeks, he was almost normal again. The one thing he never got back though was his personality, that has changed drastically. I called Mayo because this is a huge symptom that it was autoimmune and I wanted follow up treatment. None of his doctors wanted to see him again. They all told me that depression was causing the personality change and apparently they don’t think the surgery had anything to do with him getting better. All of us hat truly know him, We know that he has something autoimmune or else he would not of improved so drastically right after surgery and hormone replacement. He has had every symptom of autoimmune dementia/encephalitis but they think it’s depression. How would they really know? They have barely seen him and they ignore any tests that don’t point to depression. Once you get that diagnosis, they just stop looking for real answers!
I was also told that since he owes $2,000 on his bill, they wouldn’t consider seeing him til that’s cleared up. Our insurance has paid many many many thousands of dollars to this hospital. I cannot believe they are withholding treatment for $2,000. I paid $900 out of my pocket for the first consult that lasted for 1 hour and forty minutes. Then insurance took over after that.
Biggest mistake I ever made taking him there because now he thinks he’s better and doesn’t realize his personality change for the much worse. The rest of us can not believe what Mayo totally overlooked!

@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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@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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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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@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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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/

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@nire, I applaud you for being such an advocate for your son. In addition to the resources, @johnbishop has shared, you may also appreciate this info from Genetic and Rare Diseases Information Center (GARD) https://rarediseases.info.nih.gov/diseases/11979/autoimmune-encephalitis
What is your next step at this point?

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@johnbishop

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/

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Thank you John, I will look into that website.

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@ethanmcconkey

@nire, I applaud you for being such an advocate for your son. In addition to the resources, @johnbishop has shared, you may also appreciate this info from Genetic and Rare Diseases Information Center (GARD) https://rarediseases.info.nih.gov/diseases/11979/autoimmune-encephalitis
What is your next step at this point?

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Thank you Ethan for the website. I’m not really sure what my next step will be. It is constantly on my mind. I read everything I can find on this subject and join groups like this to get ideas. Last night, while at a church Christmas dinner, I met a man that does health documentaries. I approached him about doing one on autoimmune encephalitis/ dementia and all the antibodies that they are discovering. He is very interested, as he is looking for a new project. I’ll let you all know how that goes.
There are so many people and families that suffer with AE and most doctors know nothing about it. Some people have it for many years before it’s found and all that time they were told they had depression and put on strong meds. They have found many people that were in psych hospitals that actually had AE. New antibodies are found every year and I look forward to when it becomes more known to the every day docs. Right now it seems to be only at the big teaching hospitals and even then it’s not caught that often unless they are studying it.

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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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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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