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

Amanda:
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.
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, the 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 or schizophrenia. – I think they thought I was
also on some type of drugs. I was acting like somebody on… – PCP or LSD or bath salts. That’s how she was acting. – So they thought
I was on drugs. – I said this is just not her and there’s something
really wrong with her. But, when the psych doctor
at the local hospital evaluated her, 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 and I
did get to see her, we went in the room,
and her reaction was, she didn’t even know
who we were. She did not know who we were. She came up to us and I said,
“Amanda, it’s Mom,” and she just looked at me
and she said, “Get me out of here,
get me out of here, get me out of here.” One of the tests
that they did on Amanda 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 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,
our 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, 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 to the infusion of
these second-line agents, and woke up from her coma
within several days of that being started. – I mean, it all felt
like a dream, I guess, that with my Mom. Everything was a dream, and I really didn’t
remember much until like probably August. – I guess it was like
three weeks after receiving her doses of rituximab
that I went into the hospital, and the nurse greeted me as
I walked through the ICU door, and she said, “Oh my God!
Wait ’til you see your daughter. She’s sitting up.
She’s starting to talk.” And I just couldn’t believe it. I just stood there. My mouth dropped, like what? And I went in the room
and there she was, sitting in the chair
and a smile on her face. I mean, she gave me
a big hug and… you don’t remember, do you? And she just said to me,
“Where am I? What happened?” It was just such a joy because they told me
she would be fine, and I got to see
that she would be fine. Dr. Lancaster:
I remember meeting her in her followup clinic visits, and I sort of saw
the life breathe back into her over the next few months as she followed up with me
in clinic. – Finally, I could say,
it’s been a year, I feel like I’m…
I mean, I’m back to myself. It’s been a long road. I thank Dr. Lancaster,
Dr. Dalmau. It was really exciting
meeting him, and he just told me,
just with a big smile and a hug, “You just live your life first. Just live your life.”

14 comments

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

  2. 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

  3. 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.

  4. 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

  5. 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

  6. 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.

  7. 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.

  8. Have a child who presented with all these symptoms and more but seronegative on the LP. After a long road, 7x PEX and 3 Rituximab dosings we are making large strides. Question: does Penn treat seronegative AE and advanced PANDAS/PANS cases?

  9. My brother was diagnosed with this on December of last year he is currently in a rehabilitation hospital close to Los Angeles, it has been very hard and we don’t know what to expect especially since he also has Cerebral Palsy

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