Autoimmune Encephalitis/ Autoimmune Dementia
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!