Autoimmune Encephalitis - an Overview 

It’s shocking to think how ignorant so many MDs are about this.. How many people have ended up numbed up on psychiatric drugs for years or misdiagnosed simply due to doctors being ignorant about this!!!

I have been diagnosed with this. I had a seizure some time ago. I went from being relatively independent to being dependent on family. It is tough. Thanks to the Encephalitis Society for posting this.

I had Viral Encephalitis back in 2015 My life changed forever learning about this disease. I had never heard of it before. My life was saved and I was living a normal life till recently. I am presently in hospital at the moment being treated for the Autoimmune version now. I'm getting Steroids today. Hopefully all will go well.

I had Anti NMDA encephalitis, 11 years ago when I was only 16 years old. This video is a gem. Thank you.

Thank you for posting this. My sister is in the hospital and this is one of their differential diagnosis. Seems to fit. This video helped my family a lot. We don’t know her outcome yet. But this made this clearer.

I'm not sure where research stands on Hashimoto's Encephalopathy/ Encephalitis, but I am pretty sure that's what happened to me. I was a highly functioning adult- computer programmer and went downhill fast, couldn't drive, couldn't walk right, talk right, had slurred speech, hives all over my body, severe headaches and more, yet they told me I was depressed and had severe anxiety. Was put on treatment with psychiatric drugs and an offer to be a patient in a psych ward. And this was at Johns Hopkins. 😳🤦‍♀️🤷 As the TPO antibodies have fallen almost to none my mind is back to normal and so is my body. However my life has been completely ruined because of it. I am still in shock at what happened to me and the lack of interest in figuring out what was wrong with me. I wish someone would spread awareness to all physicians. Especially pcps and psychiatrists.

Thank you. My daughter has this. She was misdiagnosed as Autistic and tourettes for 5 years. A steroid injection for croup made all her symptoms go away as fast as they started... we were referred to an immunologist and she was diagnosed with PANS.

I was diagnosed with Autoimmune Encephalitis last year, in August. My life has not been the same since. I was having two seizures per day, behaving as I was completely out of my mind. I wasn't me, and I do not have many memories. I was lucky to have been diagnosed quickly, within a month. I started the treatment with steroids, immunosuppressors, anti seizure medication, and a bunch of other stuff to mitigate side effects... Thanks for posting this.

My heart is broken. My sister is in the hospital suffering from this and in ICU. And nothing Seems to help. Seconded case in our state. Since 2019. Thank you for posting

My mom has this and it stems from her alcoholism. Her liver failure caused her immune system to weaken and in turn an infection upon her brain. She won't wake up. I fear the worst. I wish I had made peace with her. She had seizures and ended up in the hospital. Then was well after rehabilitation for about a week. She left me a beautiful message with good intentions and wishes to see me. Then she ended up back in the hospital. She has not woken up since. I fear the worst. I am scared. I am very sad. I do not like to see her laying there alone like that. I live far away. I hope when she wakes up she remembers me. I love you Mommy.

My husband was recently diagnosed with this after 6 months of misdiagnosis. The neurological community should be more aware of the signs and be trained to test for this early on when someone presents with seizures and memory loss/confusion after being perfectly normal. This illness is life changing and it’s amazing how hard it is to find a neurologist who is trained in treating it.

Excellent video! Thanks for sharing.

Dr.Venkatesan, thank you so much for this information. I wish I had seen this earlier , I believe that my son has this but no one will help us . He had 3 biomarkers but the doctors in my state don’t feel the need to treat his abrupt onset of multiple symptoms.

I love your explanation I was just diagnosed with autoimmune encephalopathy and was looking for information since I don't know much about this condition ,I feel I understand it now .It was so easy to follow your explanation even with all my cognitive issues .Thankyou !! Cris from Texas

Are the hallucinations different between this and schizophrenia? How can we differentiate between the two?

Schizophrenia is very similar to encephalitis in a lot of ways. People don't realize how many neurological problems are associated with schizophrenia.

My son was diagnosed with autoimmune encephalitis.He was been given high dose of steroids and Immunoglobulin.He is fine with good cognitive and physical function.However he still gets brief seizures of 30-40 seconds occasionally.It has been slightly over 3 years now since he was discharged from hospital.He is still on oral antiepileptic drugs.May I know when will he be seizure free.

There is also now Actemra that is used in AE. Is this med used much these days for AE?

Very informative and can completely relate to it from my past experience

my daughter is going through since last 3 years, now she is five years old but still she is not able to sit properly or walk or stand.doctors and her physiotherapist dont give us any hope but still i am working on it and my moral is high. one day she will be able to walk I.A

My son is in relapse of an AE diagnosis but the hospital doesn't want to treat him because they are concerned about liability. IVIG seemed to get him mostly recovered for 2 years. Now he's steadily declining in cognition and regulation and more and he gets put off.

Thank you sir for yor clear explanation .

Is there a support group in Germany? I could not find one. Patients in Germany reading this please comment. (:

I had HSV1 infectious encephalitis .

Excrllent

My uncle has this, and cant communicate with us. Keep him in your prayers.

What is best place to treat this disease in india?

How long does the blood test for autoimmune encephalitis w/ Refl to titer and line blot serum take to perform? I’ve been waiting for results for 2 1/2 weeks now. Shows as pending in my lab portal.

I had thyroid cancer, i had infections, maybe im dealing with diskitis, which im going to a biópsy now, i had HSV genital which might have ellicited an immune response that drove demyelination (adem ) plus that suffered that from benzodiazepines withdrawal and its "syndromes" with all that, i couldnt get credit, i didnt found s doct willing to diagnose and screen properly for that matter, úntil today 3 more years later i have no diagnosis, i have nothing on paper screened and diagnosed which would open doors for IVG or other treatments aiming for some sort of improovement on pain, nerve damages and spinal involvement, but nothing, not even a diagnosis and proper screening, out health care is like that, you will bê offered venlafaxine and risperidal for encephalitis.

The e mail support is for any country? I am writing from Peru.

How does diet, mindset and other lifestyle practices affect autoimmune encephalitis recovery and prognosis?

I had encephalitis 6 months ago due to Corona infection and i am already an FMF patient . Thank God it was cured and left hospital after a week. The symptoms for me were involuntary sleep follwed by change in bahaviour it all happened in one day. Now for two weeks i started to sleep for long hours almost the whole day even with attempt to wake up, but i am fully concious i took 3 cortisone injections (dexa methasone) then iam back to normal, ,i am afraid this is the beginning of another episode of that disease

Sir i am dr.vinayak patil. My 5 year old daughter has autoimmune encephalitis and is in the hospital since 15 days. Ivig inj, inj methylprednisolone, inj levipil(Levetiracetam), inj Fosphenytoin (neofost), inj Gardenal (Phenobarbitone), inj Dexmedetomidine all started on drip. still did not get much result, seizures came 3/4 times a day then in drs given Midazolam drip and put on the ventilator. And it helped in reducing the spikes in the brain . Then some seizures went away. After applying midazolam drip after 2 days midazolam inj were stopped. And removed the ventilator. But now after reducing midazolam, seizures are still occurring in less quantity. Now there are 3 anti seizures drugs along with inj Lacosamide and tab Tapomac. There is still some abnormality in the eeg Feedback

Is chronic immunosuppressive ever required?

My cousin brother, who is 12 years old is diagnosed of it and is currently in icu. Ivig is suggested, but holding off due to severe blood pressure. Is there anything that this community can help with at this point or would need more details that would help you suggest anything. He is currently in a hospital in India. The comments here are very positive and hopeful. Please let me know if there is anything that helps us right now

I had Adem as a child

I had an ovarian teratoma which was removed last year due to pain. I been struggling with brain fog and cognitive decline, dizzy, tachy/bradychardia, blood pressure changes, blurry/double vision, tinnitus, fluid draining from both ears, strong headaches, weakness, muscle spasm and much more for about five years but I am getting worse after the removal of the teratoma and ovary. I can hear how my brain is being degrated, there's like a sizzling sound at the base of my brain, I hear my neck clicking and sort of jellow sound in the brain when I walk. I can barely function, lost my job a year ago, I am completely isolated and anti social now because I struggle to communicate and socialize. I fear that this is killing me slowly and no one believes how bad it's getting. I was prescribed lorazepam a few months ago and tried it for 4 days but I wasn't myself, I even scheduled an interview and don't remember how I got there, who I met with, what I said or where it was.. my uncle said I got ready for the interview and left my daughter with him, my husband said I spent $100 on jewrlery that I would never wear and I don't remember, I was not myself and I cannot remember anything about those 4 days so I stopped it right away. Can it be NMDAR encephalitis. Where do I even start? Who treats it? I am in California. Any info will greatley help. TIA🙏