I was recently diagnosed with anti-NMDA receptor encephalitis • Hacker News Board

Re: I was recently diagnosed with anti-NMDA receptor encephalitis

#241

Post by burntsushi » Thu, Jun 04, 2026, 4:29 PM UTC

jcgrillo wrote: post #219

burntsushi wrote: post #11

Earlier quoted context omitted.

There is actually haha. I've always hated sushi. And sushi is now on my shortlist to try again. I can't wait. (My handle comes from graffiti I found on the booth of a hot dog stand in Worcester MA called Coney Island[1]. I thought it was a cute oxymoron and adopted it on a silly whim. I only later learned that some sushi is indeed cooked.) [1]: https://coneyislandlunch.com/

Wow! Great to see Coney Island is still there.. I was last there ca. 2007.. Also that's an awesome origin story for your internet handle.

Yes! I just took my son there for the first time a few months ago (before the encephalitis hit).

Re: I was recently diagnosed with anti-NMDA receptor encephalitis

#242

Post by burntsushi » Thu, Jun 04, 2026, 4:31 PM UTC

dystroy wrote: post #214

You know, my first reaction after reading this was to appraise the quality of your writing, which convinced me your brain recovered. Wishing you health, of course. The world is better with you in it.

During the thick of it, I could barely write at all. Physically as well. It was physically difficult to make the letters and others had a lot of trouble reading what I wrote. (Which was especially annoying when I had to fill out consent forms for my therapist!) Just the simple task of: 1) reading them, 2) signing them, 3) scanning them and 4) sending them back to her was incredibly difficult for me to do.

I have since been scanning documents like a boss. Lol.

Re: I was recently diagnosed with anti-NMDA receptor encephalitis

#243

Post by code_duck » Thu, Jun 04, 2026, 4:33 PM UTC

kvgr wrote: post #205

code_duck wrote: post #18

Earlier quoted context omitted.

I had a much more common autoimmune disease, adult-onset Type 1 Diabetes (LADA), determined to be health anxiety by a very large, major renowned hospital who should have known better. It led to over a year of continued illness before finally I was diagnosed at an ER. I'm sure some people have psychosomatic or anxiety based illnesses, but it's rather grating to be told by a psychologist that you're worrying yourself t…

Once you have psych. diagnosis its over, doctors see you throught that lens. Ah yes, he has anxiety, of course his symptoms are psychosomatic and there is no need for more testing. My uncle was schizophrenic, medicated and living OK life after years and years of delusions. He also had untreated diabetes for years, but was on the right track. He went to doctor with pain in belly, they sent him home and told him nothin…

What I learned is also that often doctors will shrug at an unclear illness, and wait for it to become severe enough that it's obvious. Once I had 650 glucose and a A1C of 12, they couldn't say it was just a psych problem.

Re: I was recently diagnosed with anti-NMDA receptor encephalitis

#244

Post by burntsushi » Thu, Jun 04, 2026, 4:34 PM UTC

TomasSedovic wrote: post #200

ZpJuUuNaQ5 wrote: post #57

>It all started with flu-like symptoms: heart racing, night sweats, the chills and trouble sleeping. But no congestion or cough. I also felt really off mentally. A deep sort of anxiety, along with panic attacks, that I had never experienced before in my 38 years of life. It was terrifying, especially because I had no idea what was causing it. There were no life events or obvious triggers that precipitated the psychol…

What BurntSushi said regarding these things being very nonspecific is absolutely true here. E.g. Multiple Sclerosis can very well fit what you're describing, too. Commonly, there's a flare-up (we commonly use the term "attack" funilly enough)of some neurological symptoms (numb limbs, tingliness, diziness, vision issues are very common) that can last a few days/weeks and then mostly or completely subsides (until the n…

Thank you. :-)

And yes, at one point, the doctors said I almost certainly had MS. For exactly the reasons you stated: my symptoms were consistent with it. It was only when the antibody in my cerebral spinal fluid came back positive that my diagnosis shifted to anti-NMDA receptor encephalitis for certain. Prior to that, I already had a follow-up scheduled with an MS specialist. I'm guessing that was done because of how rare anti-NMDA receptor encephalitis is.

Re: I was recently diagnosed with anti-NMDA receptor encephalitis

#245

Post by burntsushi » Thu, Jun 04, 2026, 4:35 PM UTC

mtlmtlmtlmtl wrote: post #197

Glad to hear that you found your way out of the psych ward to get properly diagnosed and treated. I've witnessed first hand people getting trapped in the psych system with neurological or endocrinological conditions. It can be almost impossible to get out, especially if the "diagnosis" is a psychotic disorder. Once you have such a diagnosis pinned on you, anything you say can be dismissed as a delusion, and most psyc…

So lucky.

Re: I was recently diagnosed with anti-NMDA receptor encephalitis

#246

Post by pygy_ » Thu, Jun 04, 2026, 4:47 PM UTC

cgh wrote: post #15

My wife has a cardiac autoimmune disease that was similarly misdiagnosed (including an appalling “it’s all in your head” from her family MD at the time). We underwent a year of immense stress. Just days before her probable death, she had a pacemaker and defibrillator installed, which saved her life. I’m not entirely sure why I’m mentioning this, other than I sympathize deeply with your wife. What an absolute ordeal.

Pseudo-exhaustive knowledge disorder (PEKnoD) is a meta-psychosis that afflicts most medical professionals. It's a plague.

Re: I was recently diagnosed with anti-NMDA receptor encephalitis

#247

Post by burntsushi » Thu, Jun 04, 2026, 4:50 PM UTC

dbancajas wrote: post #171

@burntsushi thanks for sharing this. A few of the symptoms you described felt painfully familiar to my aunt who's still undergoing AE treatment and is deteriorating after a short recovery. She's 59y.o. living in the Philippines and was recently diagnosed with autoimmune encephalitis after initially being misdiagnosed as having a mild stroke and later psychosis. She had balance problems and fell down while sweeping th…

Your profile seems empty. I'd be happy to reach out privately if you can provide a way to do it. :-)

Re: I was recently diagnosed with anti-NMDA receptor encephalitis

#248

Post by haldujai » Thu, Jun 04, 2026, 5:23 PM UTC

sheepolog wrote: post #179

haldujai wrote: post #155

Earlier quoted context omitted.

You’re assuming a diagnostic test can be designed for 100% accuracy and this is not possible as disease states are spectrums not discrete categories. “Normal ranges” in lab values are just confidence intervals of population means which by definition that some normal people will have abnormal values and some patients with a disease will have normal values. The same is true for imaging. For example we use size criteria…

Eventually, diagnostic systems (whether AI or human+AI) will significantly outperform current human doctors. If humans have different normal ranges, then the tests will be specific to the individual, based on their health history, DNA, tissue simulation in digital environment, etc. If adrenal nodules of similar diameter behave differently, then the tests will inspect more than just diameter. The data to make the corr…

You’re loosely alluding to personalized medicine but envisioning is a very futuristic state we are very slowly moving towards. What you suggest is great but we are a few decades and several technological breakthroughs as well as new discoveries away from coming to what you are talking.

DNA is increasingly used in oncology, but is difficult to interpret elsewhere and in many tumors is not insightful.

> The data to make the correct diagnosis is out there, we just don't have the tools or processing power to use it yet.

Maybe, but we don’t know what or how to measure it.

> If adrenal nodules of similar diameter behave differently, then the tests will inspect more than just diameter.

Everything investigated so far such as: biopsies with histology, MR spectroscopy and measuring the diffusivity of water molecules has not been reliable in differentiating benign or malignant nodules so we still use size. These are nontrivial problems. There are technical limitations to our measuring tools.

Re: I was recently diagnosed with anti-NMDA receptor encephalitis

#249

Post by mtlmtlmtlmtl » Thu, Jun 04, 2026, 5:33 PM UTC

burntsushi wrote: post #245

mtlmtlmtlmtl wrote: post #197

Glad to hear that you found your way out of the psych ward to get properly diagnosed and treated. I've witnessed first hand people getting trapped in the psych system with neurological or endocrinological conditions. It can be almost impossible to get out, especially if the "diagnosis" is a psychotic disorder. Once you have such a diagnosis pinned on you, anything you say can be dismissed as a delusion, and most psyc…

So lucky.

This is the first I'm hearing about anti-NMDA receptor encephalitis; what a strange and scary condition. If you don't mind the prying, I'm curious about some things.

I noticed you said in another comment that you were treated with antipsychotics in the psych ward. Would you say they had any effect in lessening the symptoms? My intuition says no, since I'm not aware of any conventional antipsychotics that interact with NMDA receptors directly(mostly they act on dopamine and serotonin receptors), but psychopharmacology is tricky that way...

And, another thing. Have you ever tried dissociative drugs(like ketamine, PCP, DXM), and if so, how similar would you say your experience was to those drug experiences? Of course, feel free to tell me to fuck off if you don't want to discuss that in a public forum.

Re: I was recently diagnosed with anti-NMDA receptor encephalitis

#250

Post by TomasSedovic » Thu, Jun 04, 2026, 5:56 PM UTC

burntsushi wrote: post #244

TomasSedovic wrote: post #200

Earlier quoted context omitted.

What BurntSushi said regarding these things being very nonspecific is absolutely true here. E.g. Multiple Sclerosis can very well fit what you're describing, too. Commonly, there's a flare-up (we commonly use the term "attack" funilly enough)of some neurological symptoms (numb limbs, tingliness, diziness, vision issues are very common) that can last a few days/weeks and then mostly or completely subsides (until the n…

Thank you. :-) And yes, at one point, the doctors said I almost certainly had MS. For exactly the reasons you stated: my symptoms were consistent with it. It was only when the antibody in my cerebral spinal fluid came back positive that my diagnosis shifted to anti-NMDA receptor encephalitis for certain. Prior to that, I already had a follow-up scheduled with an MS specialist. I'm guessing that was done because of ho…

Yep. It's really fascinating. MS is much more common (and well-known) so even though the diagnostic criteria can get quite complex (because you have to eliminate any other potential case), it's a well-trodden path.

So it's great that with anti-NMDA there is an actual singular test to determine this, but given it's so rare and little-known, getting to that point is very much not given :-(.