Anti NMDA Receptor Encephalitis - Amanda's Rare Autoimmune Disease Story
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- čas přidán 16. 07. 2024
- Amanda had a rare, autoimmune disorder called Anti NMDA receptor encephalitis - but she didn't know it.
Anti-NMDA receptor encephalitis occurs when antibodies in the body attack NMDA receptors, which are located in the brain. These NMDA receptors are responsible for judgement, perception of reality, human interaction, the formation and retrieval of memory, and the control of activities like breathing and swallowing.
Symptoms of Anti-NMDA receptor encephalitis can often be misdiagnosed as other psychotic conditions, and in Amanda's case she was misdiagnosed several times.
Amanda suffered from terrible headaches, paranoia and delusions. She went to multiple doctors to seek help. Others thought she was crazy.
It wasn't until she came to Penn that she was cured. Penn researchers pinpointed her rare disease and created a treatment that cured it.
Learn more about neurology services at Penn: goo.gl/HOyHxp
Meet the physician that treated Amanda, Eric Lancaster, MD: goo.gl/b3qMyG
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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.
You can tell mom is traumatized… I can relate ..
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 💕
andrea villarreal just under a year and a half for me
@@britneynielson6250 awesome, best of luck on your recovery, it took me two years to be myself again. It's good to find others who can relate, wishing you the best
Can i talk to any of you guys?
Hello, I'm french, I had this disease in summer 2018, and today my health is OK ! So keep hope
I got a god Doctor but still had a Year full of trouble
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.
Wish she recover soon ..
I hope her recovery starts soon, its a slow process, be patient, it took me over a year to start being my normal self again. wishing her the best
I would Love to hear an update on her.
@@xdani_thethinkingneko Hi! She's on a very good recovery and is doing just fine! We're not together anymore for unrelated reasons but we're still good. She is back in school now but she has to do last year again. Thank you for your consideration!
On CZcams I was Dr imenherbal who cure my encephalitis 1year ago, with his herbs remedy, his herbs has no side effects, thanks keep doing the good work🕛
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.
On CZcams I was Dr imenherbal who cure my encephalitis 1year ago, with his herbs remedy, his herbs has no side effects, thanks keep doing the good work🕛
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. 💙
I had this, nice to see more stuff coming up about this disease...it has to be shared!
Hello rocio, I hope you are fully recovered now, and if you do not mind my question, how long were you treated? And it can be cured completely?
Luis Rodo I had it also. I get a transfusion of retuximab once every 6 months for 2-3 years. Im at 1.5 years now. I recovered mostly the first two months out of the hospital and then slowly for another 4 till I felt 100%. I recovered extrémalo fast and everyone is different. When I left the hospital I couldn’t even speak at all and barely could walk but it all came back really fast. I went to community college 2 months later although I stilled struggled slightly mentally w sluggishness for another few months
@@britneynielson6250 hello powerful lady, I appreciate a lot your detailed answer, it is sad to know how much you struggled from this illness, but Sharing your experience give us awareness to be helpful and comprehensive when this terrible disease come across to someone close to us. I express my admiration to the way so brave you fought this battle, you said it was not easy, but you won the war, and I wish your recuperation, slow as you mention, can be soon in full. Wish you only the best
I was also diagnosed with this two years ago. I’m fully recovered now. It’s so weird seeing these videos because it doesn’t seem like it even happened to me. Almost just watching it happen to someone else through a movie if that makes sense. I find comfort in knowing other people have also experienced this. It’s such a lonely disease because it’s so rare. I wish you the best ❤️
My daughter in law just was diagnosed with this. Gave her the meds she needed yesterday. Now we are waiting on her to wake up.
Just find out I got this my whole life and I’m 27 been suffering for a long time now gonna get treated ASAP 🤧🙏
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.
On CZcams I was Dr imenherbal who cure my encephalitis 1year ago, with his herbs remedy, his herbs has no side effects, thanks keep doing the good work🕛
is it curable ?
Bless this doctor and family
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.
On CZcams I was Dr imenherbal who cure my encephalitis 1year ago, with his herbs remedy, his herbs has no side effects, thanks keep doing the good work🕛
As a schizophrenic of 30 years I'm glad to see a light at the end of the tunnel for this person.
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.
Me too. I had it in 2005. Im still not entirely better I think. Its good that there's more information out there about our lives.
Where u get the help u need
Wow thank you for sharing this
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.
May I ask how your uncle had this encephalitis thing?
Is it true that this can be transmitted from bird to mosquito and mosquito to human?
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
Thanks so much for sharing your story, Anji! Glad to hear you've been in remission so long, and that you've found a way to help others struggling with AE. Please feel free to share this video with your Facebook group or any other audience that you think might find it helpful. Much like you, we are primarily focused on helping people in similar situations to yours and Amanda's find the care they need. We appreciate your comment and wish you continued good health!
+Penn Medicine I have created the first AE/HE Facebook group, participated in writing the first HE/AE compulation of patient autobiographies, had the AE Awareness ribbon designated on the world wide disability list (my admin designed it), and recently formed the first AE Encephalitis Society nonprofit (with the help of my other admin). I even had AE t-shirts made for the group members as I way to spread AE awareness. It takes the entire village. ☺️
+Penn Medicine.. my spouse is currently diagnosed with anti nmda receptor encephalitis and i would like to know how do i get her transfer to Penn
Anji: Did you make it through this on your own?
is the FB group still active? If yes, how can I find it? Thanks!
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.
mega zen I hope your getting treated and your on your way to recovery.
How did they treat you. Did the physicians use Rituximab?
Did you have a tumor?
Immunglobulin G my niece was just treated with rituximab and plex.
Immunglobulin G just IVIG and prednisone.
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
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 ❤
How’s your daughter now? My was diagnosed with autoimmune encephalitis and she’s been at the hospital for 4 months already . She doesn’t talk, move or eat , she only opens her eyes but we do not know if she’s conscious. She was treated with IVIG infusions twice but they haven’t done that anymore . Me and my family do not know what to do, we current live in New Jersey and im doing research to see if we can transfer her to Penn .
@@oliverdiaz6849 same kinda here but we are in sc so its kinda hard
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He is also a spell caster, he can cast a spell to bring back your EX lover. Contact Dr. Abhulimen through his WHATSAPP +2348100147772 OR EMAIL. drabhulimeherbalcliniccentre@gmail.com. Share the good news with others once you are cured. Thank you.
Oliver Diaz How is your daughter now?
Cake Lrete How is your daughter now?
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
Hi Christine,
Thank you for commenting. We are disheartened by the experiences your son has had in the past regarding his condition, but we are glad to hear that you have discovered the cause. We wish him the best of luck with his Rituxin treatment, he is in our thoughts and prayers. Please let us know if there's anything we can do to help.
Christine Kaye be very careful when self-diagnosing your son, but by all means keep researching as much as you can! There's an illness called acute porphyria that mimics this illness almost exactly and causes severe psychiatric problems. Please look into porphyria. I waa sure I had a particular illness but then when I found out about acute porphyria it saved my life because I then started the correct treatment which is carbohydrates! Take care 💜
so what happend?
How is your son today? My niece had the treatments 4 months ago
I had this happened to me and it's making me get emotional. I was in a coma for 3 months.
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
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 ..... 💔💔
I came across this video, because I just watched "brain on fire" on Netflix.
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.
I have had this too still have episodes of memory loss loss of taste smell 4 years later
Why almost all The Penn Neuroscience Center's videos have no comments?
My aunt in the hospital for this now its so scary
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.
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!!!
Severe B12 deficiency can also mimic mental illness and physical
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😔
Oh it's sad.can you walk? Be strong keep hope.
I am so sorry that you got sick . My 13 year old son is also sick with your same exact symptoms. It took nine months after he got sick for the doctors to agree to his diagnosis because I did my own research and also watched the movie . It was I seeing my son’s own life right before me on the TV. It’s a very hard and terrible disease for any human to endure and I pray that you will get well soon .
Music was very distracting.
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 :(
@penguins inadiorama I will ask my mum to ask for when I get out of this hospital
@@horselover7216 Did you ever get a diagnosis?
So many problems. Have u diagnosed by now? And how r u pls let me know
Did u figure it out. .I'm having the same syptom
How are you now? I’m the same?
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?
Hello,
Thank you for commenting. Penn Medicine does not typically see children but we are partnered with the Children's Hospital of Pennsylvania (CHOP) and recommend that you schedule an appointment with them for your child for proper diagnosis and treatment recommendations. Please note that we cannot offer medical advice on this CZcams channel.
To request an appointment at CHOP please visit apps.chop.edu/online-request/appointment.cfm or call (1-800-879-2467)
Jennifer Pratt
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.
On CZcams I was Dr imenherbal who cure my encephalitis 1year ago, with his herbs remedy, his herbs has no side effects, thanks keep doing the good work🕛
I don’t believe that number. I’m sure it’s way higher
@@bxstar5276 They discharged me with a diagnosis of autoimmune anti-NMDA receptor encephalitis. Unless my research is incorrect that appears to be the number.
Of course that’s just the number of people who are diagnosed with it. Others may get it and get misdiagnosed or maybe don’t even go to the doctor at all.
Actually I looked at the numbers a little bit more and the actual diagnosed cases are 1.5 million per year, but that means that living in the United States with a population of 335 million people, I had a 0.4% of contracting this by my calculations.
@@Whoopdido777 what I’m saying is that I theorise that there are many more undiagnosed cases.
@@bxstar5276 That is quite possible. That’s why I said the 1.5 million number is only diagnosed cases. There could be more, that go undiagnosed or misdiagnosed. Hell it took the Mayo Clinic (the best hospital in the world) about 3 months to actually figure what was wrong with me. They were dumbfounded for quite a while.
I just found out my parents never vaccinated me with the mmr jab as a baby, im so paranoid getting sick now
So How can we Survive With Encephalitis????
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
Hello,
To request an appointment with Penn's Neurosciences center please fill out the form located on spr.ly/6056809JA
It is possible in India in Saifee and Bhatia Hospital Mumbai
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
WHAT WAS THE PRECISE CURE, WHAT MED, WHAT DOSAGE, I HAVE SYMPTOMS OF THE SAME LEFT BRAIN CHRONIC INFLAMMATION NEED IMMEDIATE HELP!
Young Buddha see a doctor and in order to be diagnosed you have to have a spinal tap. Once diagnosed the treatment is a drug called retuxin ( retuximab) which you have to go to a infusion center to get. I had it, it’s horrible wouldn’t wish it on anyone. It’s rare and it’s predominantly in women so your most likely fine. Most doctors are unaware or won’t take you seriously because it’s so rare. You would need a top neurological team and specialists because regulate doctors can’t help much
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
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
any update please?!!! please
See doctor?
@@CC-br9qg He’s feeling better they gave him some some therapy lessons now he’s more sociable thankfully 😃 and doesn’t daydream
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
How You Get This ? It Comes Out Of Nowhere ?
Alexis Greene yeah your own body just starts attacking your brain. So it’s unpreventable but treatable
It can happen due to a low inmune system, there can be many triggers that can lead to this. Its predominant in young adult females.
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
How is she now? I’m in ICU today with my daughter 🫶🏽
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?
Yes
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.
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 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 ?
Ask to do an MRI of the brain. I’m in recovery now from my NDMA Encephalitis hospitalization. Let me know if you need any assistance I’m willing to help.
@@kerrywallen my daughter has every symptom of this and maby drs and hospitals have ignored us. Mri showed nothing and her dr refuses to order a spinal tap test. I am so afraid she is going to die. She is 30 and has what they think had been shingles a few times last year. Nobody is listening to us. I don’t know what to do. She is 30.
She has some autoimmune disease going on but no clue what. C reactive high and other abnormal labs ect…
@@MariaReyes-jp4lb I did the spinal tap test first then the MRI, then I did a first line treatment removal of the tumour then the second line treatment of Retuximab mentioned in the article I linked above. I hope this info helps.
@@kerrywallen thank you very much.
@ Jennifer pratt
My sister is currently in hospital fighting this disease and is the only one in our country to have it, this gives me hope! 🤍🤍🤍
Wish your sister recovers soon. Take care of your sis.