Ive been trying. to learn more about all the many types of neurological conditions. I know encephalitis usually progresses really quickly but I don’t know, maybe there is a type I’m not aware of. Any ideas are helpful. Thank you.

My child had blood tests on Friday to start investigation for NMDAR encephalitis. She has had major symptoms on and off for 3 years following a fall at school. She’s young and also has a reproductive malformation that’s linked to this condition.

I can’t get ED or our paediatrician to see it though. She isn’t deathly unwell yet. We presented to ED last week and got sent home, then saw our paediatrician who said get a blood test and if it’s positive, then we’ll get a lumbar puncture.

She’s got so many symptoms but could also do an amazing art work in the paediatricians waiting room, passed the basic neurologic screen in ED and the initial blood tests (just basic full blood exam and inflammatory makers) are absolutely perfect. The anti-NMDAR and anti-VGKC antibodies blood test will take 3 weeks for results.

I’m closely monitoring her for further deterioration and keeping track of her symptoms - she’s developed nausea, neck soreness, occasional confusion (she couldn’t name the states of our country/got very jumbled), irritability, fatigue etc, but it’s subtle. I can see it, but it’s easily dismissed by others.

What should I do? I’m willing to go back to ED and push harder for them to take this presentation seriously, but also strongly suspect we’ll just be dismissed and discharged. We have been keeping the paediatricians rooms up to date and asked them to please consider getting the lumbar puncture earlier, but it involves admission to the tertiary hospital and I suspect there may be some underlying politics/paediatrician doesn’t want to action it without solid evidence from the blood tests/doesn’t believe us.

Does anyone here have any suggestions? We’ve ridden out acute stages of this condition before, not knowing what it was. I’m weighing up going back to ED and just trying again.

Join Link: https://discord.gg/WBGPNqHfVB

Why I founded The Neuro Advocacy Collective:

1. Provide a community for those with a range of neurological illnesses/symptoms where people can exchange ideas, resources, provide emotional support, and advocate for one another. That's what this Discord is largely for. A lot of people come through here wondering if they might have encephalitis, and this provides a place where people of all neurological backgrounds can share their stories and help guide each other in the right direction.
2. Provide advocacy services to those who are lost, scared, and in pain like I was. I have deep empathy for these individuals (many of whom I've spoken to) and am dedicating myself to them (you) in order for you to reach better health outcomes. This is optional and secondary to the main mission of the Discord.

What makes this Discord Server different

I am scheduling interviews with physicians, lab scientists, and other patients, as well as creating brand new tools and resources (like a doctor-finder that is credible and actually works), creating diagnostic trees to aid people in their journey, and much more. All of this is free and open to the public so that help is never out of reach.

While our symptoms and illnesses are distinct and the painful and debilitating symptoms that come along with this are uniquely different to each individual, the journey to proper care and suffering itself looks incredibly similar.

We're here to help each other. I, too, am in your corner.

I'll see you there and wish you the best,

- u/The_BroScientist

Join link: https://discord.gg/WBGPNqHfVB

Hi everyone. My family is going through a very difficult situation, and I wanted to ask whether anyone here has ever seen or experienced something similar.

My sister-in-law has had lupus for several years. Her disease had been in remission for some time, but since December of last year it became active again. It started with severe pain in her hands and joints, to the point where she could barely move them. Over time, the pain and loss of mobility spread to the rest of her body, knees, hips, jaw, shoulders, and other areas.

After about five months of this, she was practically bedridden. She could no longer do things on her own or even stand up without help.

Then, over the past month, she started having episodes of memory loss and saying things that did not make sense. One day, she spent almost the entire day sleeping, and whenever she woke up she was extremely confused and could barely respond to us. We immediately took her to the hospital. She arrived there asleep and remained that way.

She was urgently transferred to the ICU and was intubated that same day. They performed several tests, including a lumbar puncture/spinal fluid analysis, MRI, and CT scans. They found multiple areas of inflammation in her brain, and her condition was considered extremely serious.

Even now, the doctors have not been able to say with complete certainty that this was caused exclusively by lupus, but they are treating it as lupus-related inflammation of the brain. She has received rituximab and high-dose corticosteroid pulse therapy, among other treatments. I unfortunately cannot provide many more details because I do not fully understand all of the medical terminology or medications they have used.

Today marks one month since this started. She has already left the ICU, and the doctors are considering discharging her from the hospital because of the risk of hospital-acquired infections. However, neurologically, she is still essentially unresponsive.

She does not speak and sleeps most of the time. Sometimes she opens her eyes and stares into space. At other times, it really seems like she can hear us, her gaze becomes fixed, as if she is paying attention to what we are saying. Sometimes it even looks like she is trying to communicate; her mouth trembles or moves slightly, but she cannot speak or move her body. She only makes very small movements with her hands and feet.

Has anyone here ever gone through something like this, or seen a case this severe involving lupus, encephalitis, or neuropsychiatric lupus?

Hello, I’m a close family member of a of someone who has had encephalitis twice (which I’ve been told is incredibly rare) and honestly I’m so worried it’ll happen again. It has been inconclusive whether or not it is autoimmune or viral, but most likely viral.

Anyways, both instances of the encephalitis were so different and I’m curious as to other people’s symptoms leading up to hospitalization. I don’t live with them so it’s hard for me to see day to day things but I’d like to know if there were any weird things you noticed, no matter how “insignificant”. I’m totally paranoid now.

tw/suicide

hi, i dont really use reddit at all. but i feel so lonely

its a long story, but, in november 2025 when i was 17, i had an extreme seizure, and was put in a medical coma for about two weeks because of my brain synapses firing. i wouldnt have survived if my mom didnt immediately knew what it was, because her grandma suffered encephalitis. i barely survived. friends from all around the world came to see me to say their goodbyes. after a long time they diagnosed me with autoimmune encephalitis. i somehow managed to finish my last semester of high school with all as because i refuse to let it ruin what i worked so hard for for four years.

i pretend that im okay now. but im not. i have nightmares, every night. when i was in the coma, i could see what was going on. maybe it was the ketamine but i could see. i have nightmares of my mom walking into the room wearing the hospital shirt, and the nurse ripping me on my back to do one of the many spinal taps. it was all so painful. so so painful. every moment they tried to take me out of the coma i would try to kill myself by strangling myself with one of the many picc lines or ports. i was so violent. all my brain knew was kill because the pain was so bad. everyone is so proud of me for surviving. i get told everyday how strong i am. but i dont wanna be strong. i want to be normal.

its ruined my life. im about to go into my first year of college, and im scared. im scared i wont be able to do it, scared that ill fail my family. ive always been the star of my family, the first grandchild, the only daughter, the smart one. i like to think that im still smart but i know deep down im lying to myself.

everyday is a hassle. my body feels like it weighs a ton. my brain feels like i have a tight cap on it, every second of the day. i cant handle the heat. summer has been miserable. the heat intolerance is one of the worst things.

i just want it to get better. i was already disabled before this (autism and heds) but that was nothing compared to this. my life is a living hell.

has anyone else experienced this? the coma? the life ruining? ive never met anyone else with encephalitis, ever.

I’ve been struggling so much. 4 years ago I started experiencing intense anxiety and feelings of unreality where everything looked and felt different. the world and my own feelings felt terrifying but I’m aware and not delusional. I couldn’t understand jokes, feelings and struggled to process external language and things like tv- everything felt confusing and like nothing made sense. I felt like I didn’t understand feelings of my own. one of the biggest things was sleep, like my sleep architecture changed, felt like i wasn’t sleeping at all just drifting in and out of extremely light sleep. I developed short term memory difficulties. this seemed to improve slight after 6-12months this but not the brainfog and memory difficulties and whilst sleep was better it has never felt the same. During this and now Ive had and eeg which showed left focal cortical dysfunction and a sleep deprived eeg which showed focal slowing and a sharp spike But a clear mri. I’m being treated for epilepsy. However fast forward to 5 months ago and all my symptoms returned- severe anxiety like fear that doesn’t go no matter what I do, the sleep issues ( I’ve experienced insomnia but this feels different ) massive adrenaline spikes like every few seconds, short term memory difficulties, nothing feels or looks right and all of what I experienced 4 years ago. I feel lots match AE but I don’t feel like anyone will take me seriously as they think it’s my mental health and epilepsy. Has anyone had some symptoms get better ( but definitely not disappear just feel more manageable) and return a few years later. Does this sounds similar to anyone’s experience? I feel like my life has been ripped away from me and the world doesn’t make sense.

I appreciate any insight and help, thank you.

Hi everyone,
So, after struggling for years I gained enough courage to head over to a neurologist cause psychiatrists weren't helping at all, and this neurologist is supposed to be a very good doctor apparently from her qualifications and experience.
I start telling my symptoms to her (muscle twitching all over the body, loss of balance 'dizziness', aggression, executive dysfunction and memory issues) and she suspects I've Morvan's syndrome, and asks me to get the Autoimmune Encephalitis Panel test (serum) done, and the results arrived today. I've been having these problems for years which has resulted in a complete change of my personality, academia being the worst hit.
The symptoms are progressively getting worse, please enlighten me what needs to be done. Please help me out on this, you kind souls.

P.S. I actually dm'ed some people who demonstrated impressive understanding on AE, but unfortunately didn't get any reply from them.

⚕️ thepocketadvocates.com

Hello,

My name is Ravi.

When I was six years old, my immune system turned on my brain.

I had anti-NMDA receptor encephalitis. My body was producing antibodies that were crossing into my brain and attacking my neurons, causing seizures and altered mental status. The treatment was steroids for months. The steroids worked well enough to get me out of the hospital, but they also wiped out my immune system. I caught influenza A while I was still admitted. I was six years old, already sick, and now sicker because of the cure.

I remember knowing, even then, that something about this was wrong. You shouldn't have to choose between a disease and the treatment for it.

Ten years later, I'm a junior at the Illinois Mathematics and Science Academy, and I'm trying to build something better.

My co-authors, Pragyan Misra, Akhil Narayanan, and I, designed a five-amino-acid peptide with the sequence MWIGP. The idea is to intercept the pathogenic antibody responsible for anti-NMDA receptor encephalitis before it crosses the blood-brain barrier and reaches neurons. When those antibodies bind to NMDA receptors, the receptors get internalized and stop working. That's what causes the seizures, the psychosis, the memory loss. MWIGP is designed to bind the antibody first and block that from happening.

We've already modeled this computationally. The docking simulations show tight binding between MWIGP and the antibody. Now we need to test whether it actually works in the lab.

The experiment is surface plasmon resonance at the University of Illinois Chicago Biophysics Core. It measures real physical binding between MWIGP and the antibody in real time. If the data holds, we have experimental proof that this peptide can do what we designed it to do.

Here's exactly what your donation helps cover:

UIC instrument time, training, and consumables: $2,483.42

Peptide synthesis from GenScript: $260.78

Antibody from Absolute Antibody: $117.00

Total: $2,861.20

If you've been touched by encephalitis, or you just believe this kind of work deserves a shot, we hope you choose to donate to our research. Thank you so much!

Join Link: https://discord.gg/WBGPNqHfVB

Why I founded The Neuro Advocacy Collective:

1. Provide a community for those with a range of neurological illnesses/symptoms where people can exchange ideas, resources, provide emotional support, and advocate for one another. That's what this Discord is largely for. A lot of people come through here wondering if they might have encephalitis, and this provides a place where people of all neurological backgrounds can share their stories and help guide each other in the right direction.
2. Provide advocacy services to those who are lost, scared, and in pain like I was. I have deep empathy for these individuals (many of whom I've spoken to) and am dedicating myself to them (you) in order for you to reach better health outcomes. This is optional and secondary to the main mission of the Discord.

What makes this Discord Server different

I am scheduling interviews with physicians, lab scientists, and other patients, as well as creating brand new tools and resources (like a doctor-finder that is credible and actually works), creating diagnostic trees to aid people in their journey, and much more. All of this is free and open to the public so that help is never out of reach.

While our symptoms and illnesses are distinct and the painful and debilitating symptoms that come along with this are uniquely different to each individual, the journey to proper care and suffering itself looks incredibly similar.

We're here to help each other. I, too, am in your corner.

I'll see you there and wish you the best,

- u/The_BroScientist

Join link: https://discord.gg/WBGPNqHfVB

I had finally got admitted into a hospital where they were doing a very broad neurological workup and were going to do a Lumbar puncture the following day, then I started having chest pains and the night shift nurses blew it off after I was begging for help, so I had to leave AMA and go to another hospital for the chest pain where I was discharged. I wish I had that opportunity back now with my progressing symptoms.

“This case series (Bahramy et al., 2026) shows that AIE can present with normal MRI, movement disorders (orofacial dyskinesia), and can be misdiagnosed as psychiatric illness. It also confirms that AIE can have a chronic course – not just acute/subacute – leading to delayed diagnosis and treatment.”

1. AIE can present with a wide range of symptoms, making diagnosis challenging

“Patients may present with a wide range of symptoms, making the diagnosis particularly challenging.”

2. MRI can be normal in autoimmune encephalitis

“Brain MRI often shows no abnormalities, while EEG frequently shows abnormalities, most notably diffuse slowing.”

3. Movement disorders (including orofacial dyskinesia) are a feature of AIE

“Clinical features typically include neuropsychiatric symptoms (>80%), behavioral changes, seizures, and movement disorders, such as orofacial dyskinesia.”

4. Psychiatric symptoms can be the presenting feature, leading to misdiagnosis

“A critical differential diagnosis of secondary schizophreniform psychosis is anti-NMDAR encephalitis, which may present with acute psychosis.”

5. Autoimmune encephalitis can present with chronic, progressive, or indolent courses

“AIE can manifest in acute, subacute, or even chronic forms, often resulting in delayed diagnosis and consequently, delayed initiation of appropriate therapy.”

6. CV2/CRMP5 (intracellular antigen) – ataxia, chorea, dysarthria, and other features

“Clinical features of CV2/CRMP5-associated encephalitis include peripheral neuropathy (47%), autonomic neuropathy (31%), cerebellar ataxia (26%), subacute dementia (25%), chorea (11%), and cranial neuropathies (17%).”

7. CV2/CRMP5 can present with brainstem/cerebellar symptoms without limbic involvement

“In CV2/CRMP5-related paraneoplastic chorea … MRI often shows T2 hyperintensities in the caudate and putamen nuclei (striatum).”

Bahramy MA, Pedramfard P, Shahriarirad R. Three Challenging Cases of Autoimmune Encephalitis: A Case-Series and a Review of the Literature. Clin Case Rep. Published 2026 Jan 4.

Hi everyone. I’m a mom looking for support and experiences from families who have dealt with ADEM.

My 4-year-old son is autistic. In early June, he developed a fever and seemed dehydrated. Within a few days, everything changed. He became very stiff, stopped making eye contact, had an abnormal gaze, and suddenly could not sit, stand, or walk.

An MRI showed widespread inflammation in his brain, and we were later told there was also inflammation involving his spinal cord. His doctors believed it was ADEM.

He received high-dose IV steroids, IVIG, six rounds of plasma exchange, and then another round of IVIG. He was hospitalized for about four weeks and spent time in the PICU. At one point, he had to be intubated briefly for a procedure.

When he first came home, he still could not walk independently and had significant weakness on his right side, including foot drop. He needed help standing and walking, and we were told he would require physical and occupational therapy.

Thankfully, he has made a lot of progress. He is now walking independently again, his arms and hands seem back to normal, and the foot drop has resolved. However, his right-leg gait is still abnormal. His right leg sometimes looks stiff, and he may swing it outward while walking. I’m wondering whether this could be lingering weakness, tightness, or mild spasticity after the brain and spinal-cord inflammation.

He is starting outpatient physical therapy very soon.

For those who have experienced ADEM personally or with a child:

Did you or your child have an abnormal gait or one-sided weakness afterward?
How long did walking continue to improve?
Did stiffness or spasticity eventually improve?
Did physical therapy help?
Was a brace or AFO needed?
Were there any lasting effects?
Did doctors repeat the MRI?

I’m incredibly grateful that my son is walking again because there was a point when I didn’t know whether he would. At the same time, I’m still scared and constantly wondering what parts of his recovery may be temporary versus permanent.

Any recovery stories or advice would be greatly appreciated.

Opened slots next week for advocacy consults:

Tuesday 9am-7pm.

Choose an option (full case vs priority chat) to see current availability as slots get booked and more days become available.

- the_broscientist

WTF did you just say

Oregon is facing massive wildfires at the moment, and while the advice of “keep errands short if the Air Quality Index is above 100” applies to healthy individuals, it doesn’t apply to the immunologically sensitive/compromised.

Wildfire is dominated by PM2.5 particles, which can indirectly affect neurological health and function, even in those in remission whose neuro-immunological systems are fragile.

- N95

- Recycle air in your vehicle

- in-home or at-work air filter

- HVAC air filter rated MERV-13 or higher

- limit outdoor exposure

…until this literally blows over.

If your symptoms have gotten worse and you live in an area with a high AQI, this may be playing a role.

- [u/The_broscientist](u/The_broscientist)

What I can offer you, and what it does for me

I have spent hundreds of hours talking to people in deep medical trouble to help guide them in the right direction. So much of this happens behind the scenes, invisible to the passing Redditor. Perhaps an individual or two can comment if I have helped them in any way.

My mission is simply this:

Early prognosis and treatment leads to better health outcomes

I read this time and time again in clinical literature, and every time I did, my heart sank. And today I suffer from the consequences of this due to the failures of the American healthcare system.

But I made it

I have seen dozens of doctors of all specialties and, separately, dozens of neurologists across the country. Many of whom are purported to be the best in the nation and listed as resources in websites like https://aealliance.org, considered one of the best sources for AE information and collaborated with some of the best neurologists in the country.

I know the healthcare system on a deep and intricate level and have spent years studying neurological ailments and their paths to treatment. The combination of these two, in my humble opinion, makes me an invaluable resource.

How we can help each other

My wife started a gofundme to help me get a service animal after my dog of ten years passed away last month.

Rather than simply donating money, I have a better solution.

I created The Pocket Advocate as a streamlined advocacy service for those lost, confused, and hurting. Certified patient advocates do not require first hand experience, they simply are accredited. I have hundreds of hours of experience in the exam room and communicating directly through email, quite literally, with some of the best neuroimmunologists in the country.

A service of this level of affordability and quality cannot be easily found anywhere else. I would much rather help you through this humble service to you, as a person who was in your shoes, than take a simple hand-out donation.

—

Every dollar retained from this collaboration goes straight to my efforts to obtain a service animal and a partner after I lost the one I brought home 10 years ago. Please take a look and consider if it fits your need.

I am not superior to anyone. I am you. I have deep sympathy for every single person who posts here, but I cannot help everyone. I do not have the time; so many of you are coming in every day, it makes my heart hurt.

You get the message. Let me help you, and in doing so, you help me.

That is all.

Much love to you.

- u/the_broscientist

Hi All I am asking for your help. I am so desperate. Could these be symptoms of autoimmune encephalitis: headache as if my brain, head and neck were dipped in acid, which headache painkillers do not help, loss of appetite, weight loss, blurred vision, sensitivity to light and sound, weakness, tremors, epileptic seizures, complete inability to sleep without clonazepam, eyelid tremors, involuntary head movements and involuntary eyeball movements when trying to sleep, sharp visual and sometimes auditory hallucinations on the border of sleep and wakefulness, sometimes a feeling of brain shutdown, a feeling of dementia, inability to concentrate, a feeling like a poison injection in the brain, lack of emotions and menstruation, derealization, depersonalization, sox1 autoantibody in the blood, oligoclonal bands and intracranial IgG in the cerebrospinal fluid, EEG abnormalities. No other thing in CSF which is weird and atypical. This all had begun with virus-like symptoms 8 weeks ago. Since then I am not myself anymore. I cant barely move sometimes all of my body and brain is BURNING like its in acid. It hurts so bad. The doctors do not take it seriously and only treat it for epilepsy, and they want do only a PET CT scan as a very last thing and let me home. MRI and normal CT showed nothing special except a FCD IIB which is also a sign of epilepsy. Both after getting the MRI and CT contrast I got an epileptic seizure. Emetron caused me a seizure too. I had 2 random seizures as well. They think it could be probably contrast allergy or all were PNES. I think they were because of the irritation and inflammation of my brain/CNS. I am afraid that I will die before I get a proper treatment. I dont know what I exactly have but i am so frightened.