Anti NMDA Receptor Encephalitis – Amanda's Rare Autoimmune Disease Story



when I woke up I didn't really remember large periods of time I just remember just feeling very very little in the hospital bed and lost on March 27 2014 Amanda became very ill I do remember not feeling well I was having frequent migraine like headaches that would actually kind of radiate down my neck giving me you know soreness of the neck I wasn't thinking anything other than maybe stress she said I'm not crazy but I can't sleep I'm hearing things um please help me and then she'd wake up and she always said she heard people talking to her through the lights through the TV that wasn't even on I don't remember any of that on the fifth day of not sleeping family doctor said that we need to bring her to the emergency room at our local hospital they told me that my daughter was bipolar schizophrenia they thought I was also on some type of drugs I was acting like somebody on PCP or ls2 your bath salts that's how she was happy that they thought I was on drugs I said this is just not her and there's something really wrong with her but when they psych doctor at the local hospital evaluator he said we need to have her committed they couldn't control her she was trying to climb out windows she kept saying she had to get to work she didn't belong here when you were in the psychiatric hospital and my husband I did get to see a woman in the room and her reaction was she'd even know who we were she did not know who he or she came up to us and Samantha's mom and she just looked bitches to get me a D give me a D he'd get me out of here one of the tests that they did on manner in the hospital was a lumbar puncture within a week we got a definite diagnosis that Amanda was suffering from NMDA receptor encephalitis my husband and I looked at each other like we had no idea what that was we went home I googled all the information I could find on the NMDA receptor encephalitis which isn't a lot but we did come across the site from Penn neurosciences and they are the place that has been placed that discovered this illness and they're doing tons of research on it and we decided that this is where Amanda needed to go so I came back to the hospital a local hospital and I said we need to get her transferred to Penn right away unfortunately they didn't agree they thought that they could treat her and I said you get me an ambulance or I'm just putting her in the car upon being admitted to Penn neurosciences I met dr. Eric Lancaster and the team of doctors and nurses that work alongside with him Amanda was previously very healthy when she first arrived here at Penn transferred from an outside hospital she was comatose and unresponsive he said to me the treatment is a combination of two chemotherapy drugs cytoxan and rituximab oh and he said then after she gets all that treatment when they start coming back sometimes they don't know how to walk again they don't know how to talk they have to learn how to feed themselves I recall that she responded very rapidly perhaps more rapidly than most patients – the infusion of the second line agents and woke up from a coma within several days of that being started I mean it all felt like a dream like I said with my mom everything was a dream and I really don't remember much until like probably August I guess it was like three weeks after receiving her doses of rituximab that I went in the hospital and the nurse free to me as I walk through the ICU door and she said oh my god where do you see your daughter she's sitting up she's starting to talk and I just couldn't believe it I just stood there and my mouth dropped like what and I went in the room and then she was sitting in the chair and the smile on her face I mean and she gave me a big hug and and I you don't remember do you and she just said to me where am i what happened and it was just such a joy because they told me she would be fine and I got to see that she would be fine I remember meeting her and her follow-up clinic visits and I sort of saw the life breathed back into her over the next few months as she followed up with me and clinic finally I could say it's been a year I feel like I'm back to myself it's been a long fruit iBank dr. Lancaster dr. Dalma it was really exciting meeting him and he just told me just with the big smile and Holly just live your life sir just live your life

12 comments

  1. I have a disease simmilare to this but it's more common in children it's called p.a.n.d.a.s it truly is hell

  2. My uncle had encephalitis back in the early 90s. He survived unscavrd and I'm glad he did.

    Frightening how encephalitis can cause all that damage etc.

  3. My wife is on the surviving end (barely) of this, and I thank the efforts of the Neurology team at Penn for bringing this knowledge to the world.  There are not enough ways to thank you for the work you have done.

  4. How do I get my sister in law there? She had great insurance when she was married, but because EVERYONE THINKS SHE IS schizophrenic with bipolar disorders INCLUDING HER EXHUSBAND AND LAWYER, she was divorced by DEFAULT?

    SHE HAS EVERY SYMPTOM FROM
    Anti NMDA receptor autoimmune encephalitis but has been treated as a schizophrenic bipolar patient

    CAN ANYONE HELP? SHE LIVED WITH MY WIFE AND I AND NOW WITH HER MOTHER BUT IT'S EXTREMELY DIFFICULT…… PLEASE GUIDE ME, FOR MY FAMILY….. PLEASE

  5. I have two sons with NMDA receptor! Amanda was lucky that her Spinal fluid test was positive! If you google Autoimmune Encephalitis you will see it says it does not always show in tests, it hides, that was the case with my son who is 22. In 2014 we went to Mayo in Rochester, MN. I rented an apartment and stayed there for 4 months, these idiots did nothing, test after test, they sent us home to LA. Through research I found out about my sons problem myself! My son is going to have Rituxin treatment in 10 days. So excited, I hope it works, he is in a very dark place in his life right now, I was crying watching Amanda speak, he was describing my son! Please know THIS IS NOT A RARE DISEASE! IT IS RARLY DIAGNOSED! We have thousand of kids in psych wards with this problem! Please pray for my son

  6. We really appreciate the work that the staff at UPENN do for patients. Thank you for sharing this informative video and helping to disseminate accurate and important information about anti-NMDA receptor encephalitis.

  7. Oh wow! Watching this video brought back all the same emotions as I am a survivor! I'm in a 12.5 year renission. And have come out of that ordeal string and helping others to obtain their diagnoses, along with my admins; we are paying it back to God for allowing us to live. We even recently formed AE nonprofit site. I started the first Facebook AE group site to connect/help others in their AE journey.Big love!💁🏻❤️Anji

  8. Makes one wonder if people diagnosed with schizophrenia and other psychiatric disorders with psychotic features may have some low-grade, recurrent version of this.

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