It started off as an ICU visit because of hyponatremia and 5 weeks later via lumbar puncture my mom (60 y/o) just got diagnosed with this. It's a traumatic journey as a family member watching this and I can't imagine what it's like as the patient. She just started the Rituximab treatment. Watching these videos gives me hope for a good recovery.

I’m so happy for you. My daughter wasn’t even seen by a neurologist for a whole year because of covid.. 9 hospitalizations the first year. Accused of drugs, schizophrenia, same story but over and over and over. Finally she was scene and diagnosed. So much damage is done. I’m happy for you… I’m crying for us.

It will be 10 years for me Feb 2020, her story sounds just like me. It's crazy, like hearing myself. Its nice seeing so many Anti NADA RECEPTOR ENCEPHALITIS survivors in these posts 💕

I had this in 2017. Almost died. But I thank God everyday for saving me for my 3 young kids. Now im sitting with Lupus and its effecting my every day choices. Be strong hold on. 💙

My girlfriend currently suffers from this, she's been hospitalized for the past three months. Due to covid information has been sparse and I've not been able to see her and I just recently learnd about this condition. We're only 17 years old and we were just about to go on summer brake together but then she got this and understandably life has been realy tough recentally. Now when restrictions are being stripped away I will be able to see her and I'm so thankful that videos like this exist to help me prepare for what's to come. As I've understood it she's been doing quite well considering the circumstances since the doctors found out right away what she had and started treatment immediately but she's still not that responsive.

I had this when I was 19 and stayed at 4 different hospitals for 3 months. It'll be almost 10 years since I had this disease and I'm glad I had amazing doctors and a loving family to help me get through such a scary time.

I had this, nice to see more stuff coming up about this disease...it has to be shared!

Just find out I got this my whole life and I’m 27 been suffering for a long time now gonna get treated ASAP 🤧🙏

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

I find it amazing how often it is that doctors just dont want to deal with something, and just say the patient is crazy or on drugs.. Dont have the medical issue talked about in the video, but have had doctors refuse to listen to me, and even got in trouble for being late to school despite being very unwell that morning. Honestly dont get how people just let this stuff go on.

You can tell mom is traumatized… I can relate ..

Bless this doctor and family

As a schizophrenic of 30 years I'm glad to see a light at the end of the tunnel for this person.

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.

This story is almost identical to mine. I went through it about 2 years ago at the age of 16. I was misdiagnosed by multiple hospitals. I finally got help and took about 3 months to recover and went home after Christmas.

I was diagnosed with nmdar encephalitis 8 months ago. I’m a nurse and my greatest fear that time was them misdiagnosing me. I kept telling my mom it was not schizophrenia! I ket telling everyone I’m not schiz! Even when I literally went through what a schizophrenic person would I know it’s not (but I was really afraid it was). The hallucinations were terrible. I’m continually praying I would not go through like that again.

Wow thank you for sharing this

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

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.

Thank you for sharing this awareness needs to be made my daughter suffered from auto immune encephalitis same disease ... The most heartbreaking thing a parent can free their child go through so happy you have recovered!God is with you always ❤

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

I had this happened to me and it's making me get emotional. I was in a coma for 3 months.

I came across this video, because I just watched "brain on fire" on Netflix.

Had my first seizure around December 2010. Not from US and took some good two months to get the right diagnosis. A bit of an early bird, but I am thankfully alive. Just got some focus/memory problems and strangely enough a tendency for depression. Life is strange

Why almost all The Penn Neuroscience Center's videos have no comments?

I have had this too still have episodes of memory loss loss of taste smell 4 years later

Make this STANDARD screening practice for treatment resistance psychosis schizophrenia. It’s kind of hilarious how people say they would rather have a malignant brain tumor than a psychiatrist disease.

This happened to me.. it was scary and I still have nightmares, I had pretty much all the same symptoms. Then I woke up in a hospital.

This was me 12 years ago.

I just recovered from this ...and I know how horrible it is even though I can't remember most of it ..... 💔💔

My aunt in the hospital for this now its so scary

Severe B12 deficiency can also mimic mental illness and physical

Wow seeing so many people that share a smiliar story, i had this back in 2010 when they still had almost no info. From this time all i remember are the clear dreams where I continued my life. I think I developed hashimotos because of this, it happened two years after having encephalitis. But Im doing pretty well now, so to anyone out there who is just recovering or has family members, be patient, yoga and physical therapy work for the body, but probably therapy also helps to understand and process what just happened during the time you were out of this world.

Music was very distracting.

I am still fighting for m life because of it, I even got epilepsy from the encephalitis😭 when I watched the movie brain on fire I could relate a 100% to everything! I don’t remember the past 2 years (not even my grandmas death).. my mom talks about what all happened but I don’t remember much.. it is very very hard to deal with this autoimmune disease.. especially with epilepsy Weichbildes sort of just one symptom of my brain infection.. I had to relearn everything! Walking, I didn’t know so many words I was like a small child.. I couldn’t read and write, I didn’t even recognize people, people that were around me all the time... it’s Hard😔

I had this back in the fall of 2017. I almost died numerous times for multiple reasons. I currently have epilepsy due to the encephalitis. Without a doubt the Mayo Clinic in Rochester, MN saved my life. If I really wanted to I could write a book about my medical history, but I’ll say that many of my symptoms were similar to or even exactly the same as yours. Things were really bad for me for quite a while, but now I just have epilepsy and take a cocktail of drugs that control my seizures. Except for the occasional blip here and there I’m totally normal. I actually did a little research and found that only 1 in 1.5 million people contract this disease per year.

I think I have encephalitis but had a normal mri. Just like susanah, from brain on fire. Posted this by the way.. This is how I feel Right now I'm in crisis zone to be honest😭 I have chronic pain everywhere that's getting worse and worse every day and every hour, also including my sickness too. I can barely type because I don't have the strength and it hurts. I can't sit up or hold my head and neck up and went from walking too not even being able to sit up etc in a short amount of time.. I have visual and auditory hallucinations that cause me to freak out I'm moody and sometimes aggressive and uncontrollable and now can't stop swearing My memory is progressively getting worse and so is my mood and mental health Frequently crying Lack off sleep but on zopiclone No meds working Incontinent with number 2 Had to have a catheter because I can't go for a wee Random shaking Dizzy Painful eyes and barely have the energy too open them. Painful when shut too Can't talk properly and forgetting what I say. Feeling unusually hot, yet normal temperature Aggitation Possible seizures Fainted several times Lathargic Loose more and more energy every day Technically mute or selectively mute. Get angry every time I talk Uncontrollable anger Not feeling safe Feel invisible Suicidal No patience Getting angry at anything and anyone Sensitive to light Amplified senses Tinitus Paranoia Neck pain Unstable in dark when I could walk Third time I can't walk and every time gets worse Intense internal itching down below Severe depression Anxiety Rare chromosome deletion called 2q37.3 Autism Anorexia Bpd (supposedly) Ahlos-danlos syndrome Neorologist did reflex tests and found my reflexes over working because my right leg suddenly started shaking. He thought it was the link between my legs and brain weren't working properly. Normal mri I'm at loss with these symptoms and I'm seriously at crisis point as I can't deal anymore. 😭 I thought I had encephalitis, but not looking like it now 😑.. They now think its a mitochondrial problem... Don't think so though :(

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?

I just found out my parents never vaccinated me with the mmr jab as a baby, im so paranoid getting sick now

Makes me sick that the first hospital and doctors misdiagnosed and assumed mental illness and drugs when the mother said it’s not!!! Trust the parents foolish doctors!!!

Jennifer Pratt

So How can we Survive With Encephalitis????

Buongiorno...ho un mio nipote ricoverato con encefalite autoimmune..lui non parla ..dopo quanti giorni si vede i progressi? Lui sta da una settimana in ospedale ..grazie

I might have this 😢 I do have confirmed cns inflammation and they put me off and misdiagnosed me since 2021 February

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

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

WHAT WAS THE PRECISE CURE, WHAT MED, WHAT DOSAGE, I HAVE SYMPTOMS OF THE SAME LEFT BRAIN CHRONIC INFLAMMATION NEED IMMEDIATE HELP!

I think my little bro 15 years old has some of these things which this women explained and I'm really worried for him. He said he had a really bad migraine for like 9 months and he said in night time he kept hearing voices in his head and he couldn't control his body. He also said that his hands were feeling numb and like he had like a prickling sensation on his hands and feet. He's quiet. He thinks too much and doesn't focus. Like as if his mind is in another world and it has made him clueless that he has low memory. Sometimes he would tell me like he feels like his head feels swollen. Cause of this he's been given sleeping spills by the doctor cause he didn't sleep for 3 days properly. Could this be this rare condition because I'm really worried for him. He used to so happy and smile alot. Now he's depressed and walks around the house. Someone pls tell me

How You Get This ? It Comes Out Of Nowhere ?

I m from pakistan .my mother is suffering. From viral incephilities.she about one month we r in hospital.now doctors said keep her in hous.her gcs is 8 .no speaking power.nor any movement .i m much worried.what can i do for her plz any one help me

My daughter has this horrendous disease our local hospital is helping her this very day she had tumour removed no do steroid immune drip again then if no showing she is getting better they are going try plex. She is in icu right now April 2022

Inflammation or inflammatory response (TH2) is the branch of the immune system that adjuvants activate. This disease as well as pandas and autism are all started by inflammation in the brain. Interlukin 6 causes severe brain inflammation and is implicated in autism. It is just one price of the puzzle, the other being the gut brain biome and intestinal bacteria. Scientists can induce and reverse autistic symptoms in mice by triggering interlukin 6 inflammation than reversing it. They can even do this in utero by activating the mother mouses immune system; the offspring are born with severe brain inflammation and autistic behaviors.

My son has had a psychotic break a few weeks ago and we have no idea what's wrong. Should we try to get him tested for this? Anyone have any advice?

My son is in the icu having the same symptom’s as she is and they can’t find the cause of it . He’s on a ventilator feeding tube anti viral medicine steroids bacteria medicine. He’s been stable but isn’t able to talk or stay awake he wants to keep his eyes closed . He been in the icu since Friday . What should I ask to look for ?

I had to be learned how to walk and talk again at 3 and a half years of age 12 07 1990 Daniel Edward Donoghue hit by motor bike triggered my encephalitis inflamed brain and all brain scans negative for brain damage and any brain disfunction until years later encephalitis caused me to show frontal lobe volumes damage at 13 years of age no damage in 1993 after my motor bike accident hit me mri Brain scans showed no brain damage at all them 13 years of age brain mri scans showed frontal lobe damage complex volumes left side faster than other side due to my encephalitis inflamed brain on left side and also slight damage frontal lobe complex because my encephalitis inflamed brain caused this truth

My sister is currently in hospital fighting this disease and is the only one in our country to have it, this gives me hope! 🤍🤍🤍

@ Jennifer pratt