What is Anti-NMDAR Encephalitis?

An overview of Anti-NMDAR encephalitis by Dr Michael Zandi, consultant neurologist at the National Hospital for Neurology and Neurosurgery, Queen Square and University College London Hospital, London.
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[@kamiiam741]

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.

[@encephalitisinternational]

Thank you for your comment and your kind words about the video, Kamiiam. We are so sorry to hear of your anti-NMDAR encephalitis diagnosis last year. You are not alone - we are here for you and your family. Please don't hesitate to reach out to our support team at [e-mail] any time you have a question, they will be happy to help however they can. We also have a few services to help you connect with others with similar experiences of encephalitis, if this might be of interest.

[@shymaashyma5785]

Sorry to hear of your suffering wish you get better soon.but what were your symptoms? I had encephalitis after a COVID-19 infection and been hospitalized for one week then was dismissed and declared cured but keep on having episodes of light headednes &brain fog and flu like symptoms,body ache and I am afraid those might be signs of recurrence of encephalitis but at lower grade

[@tobiaslerone6220]

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.

[@starloced]

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

[@vikrantkulkarni1241]

yeah same here

[@paula_morton912]

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.

[@miriamwilliams9603]

This was an awesome presentation

[@deepaknayyar9285]

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

[@farahshreef6421]

very nice and informative talk

[@encephalitisinternational]

Thank you for watching Farah!

[@danielacorreia2292]

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.

[@encephalitisinternational]

We are so sorry to hear of your daughter's anti-NMDAR encephalitis, Daniela. You are not alone - we are here for you. Please don't hesitate to get in touch at [e-mail], or call us on [phone] if you have any questions or would like some support.

[@danielacorreia2292]

@@encephalitisinternational thank you very much!

[@jesuslovesyou.777]

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

[@encephalitisinternational]

Hi Jamie, thank you for your comment! If you are in need of any support please get in touch with our support team at [e-mail], or [phone]. Here for you.

[@thepappies]

Mine was triggered by a recurrent seminoma after 30 years presenting as a germ cell teratoma in my abdomen Had excellent treatment in nz at Dunedin hospital followed by surgery now left with some memory issues

[@encephalitisinternational]

Thank you so much for sharing some of your story with us, Alan. We have a factsheet on managing memory problems after encephalitis, if you've not come across it before: www.encephalitis.info/managing-memory-problems-after-encephalitis. We are here for you any time you are in need of any support - you can call us on [phone], or email us at [e-mail]

[@kathiejohnson6607]

I’ve been battling this for a number of years

[@encephalitisinternational]

Sorry to hear this Kathie, our support team are here for you - you can reach them at [e-mail], or call on [phone]

[@jesusislove3058]

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.

[@encephalitisinternational]

Please seek urgent medical attention if you are concerned you may have encephalitis, JesusisLove 30. Our support team are also here for you - to provide information, advice and support (at [e-mail], or [phone]), but only a treating doctor would be able to diagnose and treat the cause of your symptoms.

[@ujjwalsilwal1175]

JesusisLove 30 yeah me too getting worse day by day

[@thewildokierose]

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.

[@encephalitisinternational]

Thank you for sharing with us Wild Okie Rose, we are so sorry to hear of your son's illness. We are here for you, our support team are here to answer your questions about encephalitis: you can reach them at [e-mail], or on [phone]. You are not alone.

[@KathrynwithaY]

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?

[@emmalouise7729]

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

[@encephalitisinternational]

Sorry to hear of your symptoms, Saoirse. Our support team are here for you, you can reach them at [e-mail], or call them on [phone]

[@kathyross9940]

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.

[@encephalitisinternational]

Hi Kathy, thank you for reaching out. If you could send this query to [e-mail], or give us a call on [phone] we'd be happy to answer your questions about autoimmune encephalitis.

[@jesshall1996]

Hi bless your heart. Can you give an update on this matter ? I hope you received the help you need.

[@Thrissur2022]

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

[@encephalitisinternational]

Hi Nikhil, thank you for commenting and sharing about your sister's Anti-NMDAR encephalitis diagnosis. We are here for you - please get in touch with our team at [e-mail], or [phone] for support, information and advice. You are not alone.

[@carousel15drummond92]

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

[@user-hi6nm9od2l]

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

[@encephalitisinternational]

Thank you for your comment, C. You are not alone, we are here for you. You can learn more about Hashimoto's encephalopathy here: www.encephalitis.info/hashimotos-encephalopathy. You can reach our support team any time you have a question on [phone] or by emailing [e-mail]

[@soumiadahane6446]

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

[@encephalitisinternational]

Vous pouvez en savoir plus sur l'encéphalite antirécepteur NMDA ici, sur notre site web: www.encephalitis.info/nmdar-antibody-encephalitis

[@cheghetex]

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