What is Anti-NMDAR Encephalitis? 

I was diagnosed with this type of encephalitis last year. I’ve never been through anything like it and as bad as it is for me just realizing how different I became, it was worse for anyone close to me who witnessed the change. It’s been a year and my family and friends still keep a close eye as if they are looking for signs of it returning. I hope that never happens. I wouldn’t wish this on my worst enemy. This is a great video. We need to get the information out to every doctor and nurse. I had to convince the ER doctors that I really wasn’t crazy. Took a few trips till one doctor finally checked. Thank you.

I'm so glad there is a Society for those with this ailment, there are too many doctors who are dismissive or do not understand this condition.

i’m here after watching hannibal - i wanted to learn more about will graham’s condition

I am aware of EEG, epilepsy treatment, CT scans and a lumber puncture to measure spinal fluids. However I have learned a lot more from this amazing video thanks.

great insight in to the Anti-NMDAR encephalitis . Thank you

This was an awesome presentation

I would love to be seen by one of you. I live in the USA.

My two year old daughter was recently diagnosed with Anti-NMDAR Encephalitis in Brazil. In November 2020, his first diagnosis was viral encephalitis, but he continued to have convulsions, involuntary movements, regression in speech and agitation. She started immunotherapy with human immunoglobulin this week, but we are still looking forward to her improvement and whether the treatment will take effect.

very nice and informative talk

I’ve been battling this for a number of years

My son has many but not all of the symptoms, however doctors keep prescribing antiphycotics. The drugs take off the edge but he still has constant head pressure. They've only given him an mri (unconclusive they said because there was nothing to compare it to) and won't do spinal serum.... no matter how much I beg.

Just how rare is it exactly if it isn’t routinely tested for amongst psychiatric patients? You can’t really put a bottom number on the denominator of it. How many do you test that do not have it. I think it may have an incidence rate about half to a fifth of all treatment resistant schizofrenias.

Is it possible that I have or had undiagnosed NMDA? If so, whom should I speak to? I live in Australia. In 1999 (aged 37yrs) I was diagnosed with MS and after trialing several different types of treatment, two were used in tandem, longterm. In 2006 I developed serious contra-indications (which included disorganised thinking, seizures, paranoia, mood problems, hallucinations and others) and was told I can never use those MS medications again. However, the contraindications continued and in 2008 I was diagnosed with complex partial siezure epilepsy, which has been treated and stable ever since, although most symptoms still present in mild forms. Other symptoms include speach impediment when stressed, memory & balance issues, all consistent with MS, all impacting my ability to work. Could this also be linked to Anti-NMDAR? Additional information: As a baby, my mother sort medical treatment for me when I had a high fever and suffered seizures. She was ignored and my symptoms continued, but decreased over time. Growing up, I was socailly awkward due to speach dificulties, persistent low mood and 'an overactive imagination' which today would likely be investigated as ongoing hallucinations. As a young woman, I had prolific hormonal and menstral issues starting with early puberty (10yrs) which increased as a result of complications and infections following the birth of my son, via caesarean section when I was aged 18yrs. However, my health was largely ignored by doctors and left untreated, until I was hospitalised and almost died at age 23yrs due to extreme PID. Hormonal issues arising were only overcome by taking HRT until post-menopause. In recent years i have also been diagnosed with another autoimmune disease (arthiritis) and in 2019, I was forced (medically) to leave paid employment.

Unfortunately sometimes no possible way to diagnose this condition! :( Since 3rd of may I have worsening symptoms of encephalitis. Every week came out something different symptoms. I even came home to Hungary here I have more symptoms. Last 4 weeks developed crazy pain in my ovary comes and go. I had MRI I had Ct scan I had blood test I had abdominal mri. The only thing I did not have is a lumbar puncture.:( I have mixed symptoms neurologically every day different things and there is no way to convince the doctors to do a lumbar puncture.:( I live in London and there is no hope no help seriously I went everywhere.

If Dr Michael Zandi wants any more information we be happy to write to him and send off for possible research My dad aged 81 died from this Encephalitis. He also had IBM myositis a rare condition caused by the body attacking the muscles. Encephalitis and IBM myositis both say no link to the condition although I query it and say that Encephalitis attacks the brain proteins as it thinks so type of germ whereas IBM attacks the muscles in the body. We have no idea why my dad caught it he never had a fever but had a headache once or twice which we put down to stress or just a headache. He did forget things his GP put down to old age and getting on in years. He would move his fingers like he was playing an organ but, he told us he was doing excises to keep his hand from failing. The seizures were nasty and horrible to witness he would chew his bottom lip until bled and stare. He would often swear (not like him at all) to staff on the ward when he was talking, to winking, and trying to say something but mumbling it or repeating the same word for example 18, 18 , 18 when is my birthday 18 which was tragic to witness or robin hood did we get that answer right Simon “yes dad” Robin hood did we get that answer right and it would go on until he went off to sleep or we changed the subject but would hook onto another word.

I am not for sure if I have this or if I am crazy. My brain hurts and my attitude got bad. I am tired and act slow. It feels like my head is being compressed. I cannot remember things of my past or feel happy. My mood is very down.

I have all of these. It started in November 2021 and has gotten way worse. It came out of nowhere. The doctors won’t test me for anything physically except for an MRI. I want a spinal tap but I can’t get a doctor to do one. It’s blamed on my mental health

Hi sir...my sister is diagnosed with same today..... could u pls guide me what all needs to be done......i resides in India...

I got Encephalitis in 2005. It was decided that I had Encephalitis Lethargica. But all these years later I am trying to be rediagnosed because I believe that I had this type instead. I can understand why I was misdiagnosed because this type wasn't really discovered until 2007. Has anyone else been misdiagnosed like this?

I have Hashimoto’s encephalopathy Does this relapse? Years later?

S'il vous plaît pouvez vous m'expliquer la physiopathologie de Cette maladie

My daughter had ant nmda receptor encephalitis she went through hell 8 to 9 months had all done the steroids then rituximab was awful so sad and painful to watch my normal daughter turn into this was in icu in a mental hospital but was a long road but we got her back she still on psychotic drugs but slowly weaning her of them she had a teraroma tumour on the ovary she does not remember much but is back to work as a nurse. Still not 100 % right as fitness I mean but has a little forgetful ness but on phase back to wok hopefully stays away but now we no what signs are took ages for diagnosis we hunted all over the internet and realised we thought she had this the lumber puncture detected it and the tumour

Bisakah ini sembuh, ponakan saya sekarang divonis terkena penyakit ini😢