Awful to think how there’s probably people out there stuck in a. Psychiatric Ward knowing they shouldn’t be in there. And every time they might try to insist they shouldn’t be there, they are not psychotic and they need a specialist doctor they are dismissed as being delusional. Friends & family have come to terms with them being mentally ill, and they’re just left to deteriorate & die in a psych ward.
The clock test is such a BASIC congnative assessment test the fact that no one besides Doctor Najjar thought to do it really shows how appallingly neglectful the American medical system is.
Literally if anyone would have ordered a speech therapy or occupational therapy eval at any point, like what happens routinely in rehab hospitals, it would have been spotted. I'm a speech therapist and I have people drawing clocks almost every day.
My GF is currently suffering to this disease. :'( She is positive with Anti NMDAR encephalitis and is still in treatment. I really hope she recovers. I miss her so much. There will be a minute where she recognizes me and smiles at me then goes blank again. :'(
MissBlackKitty1997 how did you recover? I am in a psych ward. I am taking rexulti strong psych meds but it’s not the cause, what caused it was going off my previous psych meds risperidal 3 to 2.5. I have chronic brain inflammation now for 8 months. What’s the steps to get diagnosed. I have court tomorrow, this is real and I am wondering what’s the medication they give? Can you respond ASAP?
@@YoungBuddha as far as I know i was diagnosed with a lumbalpunktur, spinal fluid, and got a special type of chemo called rituximap? + lots of stuff to keep me alife. I do not have Any memory going through Any of this, but My family and boyfriend kept a journal during My blackout
Hey Susannah... Im so glad you are well and recovered... 👍💕That doctor deserves an award. I work in a specialist neurology ward that covers all of Scotland and we get cases of anti NMDA receptor encephalitis.. Its frightening for the patients and family and as a psychiatric nurse aswell as Im dually qualified it scares me to think how many must have went undiagnosed years ago and many lived there days in psychiatric facilities.. Im so glad more is known about it now and getting diagnosed as early as possible is crucial to a full recovery. I am so glad that Doctor was there and used his knowledge to test for the condition. 😊Loved the movie brain on fire 👍
We still have a lot to learn about NMDA encephalitis. Doctors need to listen to their patients and family. It's so misdiagnosed and it's scary. It is a terrifying disease because the diagnosis is often late. I'm so glad the movie "brain on fire" is spreading awareness and bringing it to light. I have done research on NMDA encephalitis and the statistics are scary, it affects mostly women in their adolescent. In saying that it is often misdiagnosed due to the presentations such as self harm, hallucinations and personality disorder. We must keep on fighting and being educated in this particular illness and keep helping young women.
This is actually incredibly revolutionary, another book called Infectious Madness by Harriet Washington speaks on this specific theme that mental illness is simply our brain with a flu in the same way bacteria makes us have a cold sometimes bacteria can affect the brain which will have psychiatric representation. I feel incredibly sad for Alllllllllllllll those people who this type of disease has inflicted who are in psychiatric wards or dead due to a misdiagnosis 😓
After a TBI I had to fire my family practice for refusal to send me further up the line to neurological care and advanced imaging. If I had stayed, the new doctor would have thrown myle in a psyche ward for not accepting her misdiagnoses. She had the nerve to question me about why I was blaming my post-traumatic symptoms on the brain injury rather than complications from medication I was taking in order to work after some previously acquired serious work injuries. The movie made me cry. She is such a strong lady, but I must also say that if you do not have top-notched insurance with cataclysmic coverage and family with good heads and hearts to insist on proper care you will be misdiagnosed and thrown away. Her parents are CHAMPS ! Head injuries and brain conditions are supposed to be subjects of funny entertainment and sadistic sports anomalies to be overlooked in society. It is a good thing she has good parents !
I have moyamoya disease. The movie had so many similar moments & memories for me. The scene with the dripping sink. I had a freak out after neurosurgery in the hospital claiming I could hear water dripping from the ceiling that no one else was hearing.
At 7:45 seconds the male anchor person seems to suggest that mental illness is separate from and different from physical illness. Mental illness is physical illness. Mental illnesses, like schizophrenia and bipolar disorder, are medical conditions that are treated with medications that alter the brain's neurochemistry in order to correct the proportions of certain neurotransmitters active in various areas. Conditions like schizophrenia and bipolar are physically characterized by an abundance or lack of dopamine in different areas of the mesolimbic and mesocortical pathways. The same goes for clinical depression and generalized anxiety disorders. While I have enjoyed Susannah's book, I feel that there is a desperation to differentiate her condition as a separate thing from "mental illness". I can acknowledge that it is different from a physiological perspective. However, Susannah's book contains allusions to alyssums and "One flew over the cookoo's nest" references that simply reflect continued ignorance about mental illness. The fact that her parents were initially terrified that she might be admitted to a psych ward again confirms that some people just can't move past the stigma. MENTAL ILLNESS is PHYSICAL ILLNESS. Just like when a diabetic patient has too much glucose in the blood, mental illness is when there are too many or too few neurotransmitters at various receptor sites. Mental illness is not something that a person can fix by simply working on the "wellness" or personality. Although i found this story to be fascinating, there was an opportunity here to not just spread information about anti-NMDA-receptor autoimmune encephalitis… but to perhaps also raise awareness about mental illness and help break down the stigma.
Natalie Holden Maybe her parents knew she was physically ill and the symptom-treatment medications that are typically given to those with "mental illness" would not save her life.
Pretty much this EXACT same thing happened to me this time last year. I'm now nearly completely recovered from ADEM Encephalitis. Still too scared to watch "Brain on Fire." Too real..
I don't blame you, this is so scary! Jesus will help you face and overcome those fears tho. He can Set you free from them if you ask. Much love to you!
I watched the movie. Thought the relationship of the two parents working together was interesting, even though they were divorced. Good that the office staff at the New York Post recognized that Suzannah had an illness and shouldn’t be fired. I would have liked to see a scene of what the brain biopsy showed. So interesting how the mechanism of this new disorder is now understood because of the work of neurologists, pathologists, immunologists, and affected patients.
Sarah McFly it did stay true to the story but I also felt like I was watching a lifetime movie. My sister has this exact strain of encephalitis and seeing it on the screen was crazy because it was spot on to how she was. She was undiagnosed and misdiagnosed for two months. My moms friend is the one that found this disease after searching online for weeks. Literally the craziest thing ever
Credit goes to parents who did everything, from pressurizing doctors to denying psychiatric ward to get their child back to life I live in India , such a poor country Doctors took 4 years to detect brain dysfunction because of Anemic hypoxia In those 4 yrs they gave me antidepressants to treat anxiety n depression Lol Value of life in India is zero If you are not rich , then you are going to suffer n die
What meds are you on or diet .. did you have similar symptoms.. I have 12yrs with so called organic cognitive issue but I too was healthy than I’ll like her .. chronic migraines debilitating bs sesiours .. and had flashing of light in vision 24hr’s ... she got ill sprout the sam yr I did
the doctors never knew what was wrong with my mum, she had similar symptoms.. they diagnosed her with "CJD" n told us there was no hope.. she died in a nursing home months later. so scary n sad to think it could've been something like this & she could have been saved..
Doctors love to blame psychological issues, alcohol, drugs, and partying when they cant find a real reason. They tried this crap with me for 6 years until I gave up on them coming up with a diagnosis and I researched and identified my own problem. I had CRPS and presented on day 1 with symptoms anyone familiar with this condition could have diagnosed.
I'm a kid and I've already been diagnosed but I'm working to find the right treatment. I was diagnosed with P.A.N.S. and the difficult thing about it is that there's very few doctors who understand it. Some don't even believe in it and think you're flat out crazy like they thought for this girl. Luckily I found a doctor who understands it. Some think that it's a form of Encephalitis. Either way it comes from an infection that goes untreated for a little while such as, strep throat or lymes disease. It causes the immune system to attack the brain just like this. It affects a part of the brain where OCD and anger are. Causing you to have OCD, tics, and agitation episodes. At one point I went into a catatonic state for a few days which the doctors couldn't explain. These things are a long process and it's sad to think of how many of these people get put in a psych ward or something.
I saw something about a boy on Facebook, then someone mentioned brain on fire, so I watched the trailer for the film and then I've ended up here. Woh what a journey 😂😂😂 anyway.... What an amazingly interesting story. Can't wait to watch the film.
sweet haaart can u email me and I'll give u my phone number so I can talk tI you more about it. Long story. If u want. My email is childofGod42980@gmail.com
Sorry to hear. I have also had a traumatizing experience with an illness very similar to anti-NMDA called acute porphyria. What I went through haunted me for awhile but I've learned that time heals.
I came here because my lecturer asked me to watch brain on fire on Netflix as we just learned encephalitis. But I don't have Netflix, so I search in RU-vid. Hahaha.
Very similar has happened to me too... I was very fearful all of the time and wanted to kill myself even in front of the family few times and in the hospital. I am still having PTSD from the psychiatry gard they have put me in for 2 weeks and after the hospital I still had nightmares and few times I was waking in the middle of the night or couldn't sleep alone. I hope it will get better. I had lost my job too and my boss was like Susanna's pretty harsh in the end and didn't care about the illness really.
Based on what I have seen in hospitals and ICUs in the US, doctors that have studied oversees are far better at diagnosing illnesses that American graduates.
I think I have encephalitis but had a normal mri. Just like susanah. 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 :(
See this is the difference between American doctors and doctors outside of the US. The IMGs/FMGs think and look outside the box. This is why it's so important to hire physicians from other countries, because they have been trained to diagnose quickly without the confusion that American doctors have.
Just seen this video as my daughter aged 34 was a carer at ninwells hospital and has been a carer for 19 years and exact same happened to her they have eventually dignosed her with encephalitis NMDA and is getting put on steroid this week I’m praying she gets a full recovery this has been a scary painful frightening time for her and our family as we knew she was a normal happy young woman’s and then to some one who was taking seizures fainting then in and out of confusion then eventually never really knew us then angry like Tourette’s talking hands going just starring at us .it is the saddest thing and feeling of helplessness so praying this world just want to say this needs to be researched my daughter is still in hospital and has this today 14 march2022 praying she recovers she is on steroid drip hoping it helps
I show symptoms:/ .. idk how to get the help .. don’t have much support of love ones she luck to have you .. I’ve been living with symptoms since Susan got ill .. wondering if it was something trending in foods that lead to it .. so weird
My step-dad had this it was his months of madness he had the exact same symptoms and misdiagnosis' we only realised that he wasn't the only one with Brain on Fire
+digitalmediafan Yes, it was terrifying seeing him like that and I remember the dinner where he started talking in tongues and said he was going blind.
I'm in Ohio Ann's I'm going thru this but the drs and hospitals won't listen to me they just think I'm either a druggie or crazy and I'm not either. The way I'm feeling physically and the brain feeling like is on fire and my spine and just everywhere is making me feel anxiety & paranoia and nobody will help me I'm REALLY afraid I don't want to die or end up brain dead. Please help.
I watched the movie and certain parts of it were at bit funny the disease of course isn’t funny but some the acting is just so good. (I’m saying like when she was jumping on the office table)
sandra dearing The male, Phil Schofield, won't have had a clue what mono is as we don't use that term at all that in the UK, we call the disease glandular fever, I had never heard of mono either so had to Google what we call it in the UK
6:06 The right side of your brain actually doesn't control 100% of your left visual field. The optic fibers are half-crossed meaning that the fibers are both ipsilateral and contralateral therefore resulting in your left hemisphere to control the left and right visual fields and your right hemisphere to also control the left and right visual fields. That's not even including myers and barums loop that include the temporal and parietal lobe that control the inferior and superior visual field. I don't believe the drawing of her clock had much to do with the visual field but a form of cross connections with the corpus callosum within her brain.
Allison Rowley I'm actually one year away from graduating with my Ph,D in Cognitive Neuroscience. So I'm not a doctor quite yet, but I would say pretty close!
My brother is in hospital right now im really worried not sure what to do or go..he has similar symptoms and doctors haven’t found anything yet. Any suggestions?? Please
Somehow you need to get in contact with Doctor Souhel Najjar who diagnosed this lady...www.northwell.edu/find-care/find-a-doctor/neurology/dr-souhel-najjar-md-11363999
Imagine if someone was able to spread this disease through food. If they wanted to desimate a country in war or something. It would be a proper zombie apocolyps but no one would be eating eachother. Thank god its so rare. I purchsed the book anyway, find this fascinating and fair play to Suzannah for sharing the entire story with everyone.
Awful to think about how there are probably people out there stuck in a Psychiatric Ward knowing they shouldn’t be in there. And every time they might try to insist they shouldn’t be there, they are not psychotic and they need a specialist doctor they are dismissed as being delusional. Friends & family have come to terms with them being mentally ill, and they’re just left to deteriorate & die in a psych ward when they could of actually returned back to a normal life eventually.
