burntsushi

Thanks for the thoughtful response. There isn't a world in which I touch psychedelics voluntarily. Like is it possible if I existed in a vacuum? Maybe. But I couldn't take that risk, no matter how small, and do that to my family.

Thankfully it was only ever a passing curiosity for me. A bucket list kind of thing. I am now very happy to replace with many other amazing experiences I hope to have. :-)

Thank you for that link! That was an interesting read.

My own PCP gave me a GAD diagnosis initially. I don't even know what he should have done to be honest, or to the extent that it colored evaluation from other doctors.

The time from when I first saw my PCP to when I saw a neurologist was about a month. Maybe if I saw a neurologist earlier it would have been "too early"? I have no idea.

My main quibble still remains with the ER who sent me to a psych unit without a neurologist seeing me. But I'm not a doctor and I don't know how to evaluate the reasonableness of it. It was very likely multi-factor. (And I was eager to get into an in-patient facility due to being so unstable at home.)

These are the best comments. Hearing from someone else with AE is really wonderful. I've heard from only a few. And I'm really happy to hear about your mostly smooth recovery. I hope it continues!

> it’s rare to see this condition mentioned outside a specialist neurology setting

I only realized this from the Wikipedia article on anti-NMDA receptor encephalitis, but it's apparently what the main character (Will) suffered from in the Hannibal TV show. I watched that show and loved it. I had no idea about the specific disease he suffered from. If you had asked me before this, I probably would have said that he had something like bipolar, like Carrie in the TV show Homeland.

> imagine your immune system spontaneously deciding to run an ablation test on the live neural network inside your skull

This is brilliant. I'm totally going to steal this.

> Today, life is mostly back to normal.

This is heartwarming. I feel almost "normal" now. There are some lingering issues, but there's improvement. I hope it continues.

> My first symptoms were brief “twitches” that appeared simultaneously in my left arm and face. I later learned they were seizures.

This made me remember that I had some twitching too. I had two EEGs, but AFAIK, no evidence of seizures was found. Thank you for this, because it reminded me to write this down as a question to ask my doctors at my next follow-up.

> Wishing you the very best, and I hope the CIELO trial delivers positive results for all of us.

I'm feeling even more excited about being in the trial after the response from everyone! Especially those with AE.

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If you don't mind me asking, how long was it between when you first noticed symptoms and when you got treatment? And what treatment did you get? (The same as me? IVIG and IV steroids?)

Prying is great. Ask away.

> 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?

Your intuition is right. The antipsychotic was actually prescribed by a psychiatrist during my second hospital stay at Brigham and Women's and not at a psych ward. (I would later enter another psych ward where the psychiatrist there prescribed a different antipsychotic and took me off of the old one.) I essentially begged for it because I wanted something that would help me that wasn't Ativan. Ativan helped a lot, but I was so concerned about it being a benzo and getting addicted to it. I wanted it to help me sleep too. The antipsychotic was prescribed in the window of time where they thought it was MS. I hadn't gotten the positive antibody test result back yet.

I'm being a bit vague here in terms of why I wanted it. I don't mind going into more detail personally, but it gets extremely dark and extremely intense very fast. I don't know if that's something I want to publicize yet. As bad as my OP sounds, it was in fact way worse.

> 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.

I have not. The hardest drug I've ever done was a few puffs from a vape pen of marijuana about 6 years ago. Otherwise, before the encephalitis, I would say I was a moderate consumer of alcohol and tobacco (via cigars, not cigarettes). Once the encephalitis started (early March) I went cold turkey on both alcohol and tobacco and did not suffer any withdrawal effects AFAIK. (This was a question asked by many doctors, many times, repeatedly. I was always proud to give a consistent, "Zero alcohol since March N. Zero cigars sinces March N.")

Prior to that I had considered trying LSD some day. After this, not a fucking chance.

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

So lucky.

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.

See also: https://news.ycombinator.com/item?id=48400955

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.

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

After my abnormal brain MRIs, my understanding is that the diagnosis came down to either some kind of encephalitis or multiple sclerosis. But test results have to come back first. I was even set up with a follow-up with an MS specialist. Once my anti-NMDA receptor encephalitis test came back positive though, that follow-up got cancelled and replaced with a neuro-immunologist that specializes in these sorts of things.

And even if I did have an MS, there are various sub-types that require going through something quite complicated call the McDonald criteria: https://en.wikipedia.org/wiki/Diagnosis_of_multiple_sclerosi...

<3

> What have your experiences been with using AI for medical advice?

I had been trying to use Gemini during my bout of encephalitis before treatment. I wasn't really trying to diagnose myself, but instead, was looking up side effects of the various (psychiatric) medications I was on. At the time, I (but not my wife) had thought all biological causes had been ruled out due to testing from my PCP. To be clear, I wasn't really in my right mind, so whether this was a reasonable belief or not (likely not) isn't something to be assumed. Like, I just thought I had GAD. Or OCD. Or something latent that had just all of a sudden started rearing its ugly head.

I found Gemini's reporting of side effects of medication to not be helpful. Especially because it led me to wonder if some of the things were "in my head" (without a doctor even needing to say it). Anyway, there was never a point at which any AI suggested anti-NMDA receptor encephalitis. That didn't really come up until I got into the hospital and had an abnormal brain MRI.

I've since switched to ChatGPT, which I find to be leagues better than Gemini personally.

This is all really hard to explain, so I apologize if this doesn't make a lot of sense.

I went to my doctor an entire month before that.

It took a fall and a hit to the head to go to the emergency room.

The interesting bit here is that getting to talk to a psychiatrist was one of the main things that "excited" me about getting checked into a psychiatric hospital. My understanding, at the time, was that they crossed the lines between biological and psychological. A psychologist with an MD, if you will. That seemed, at the time, like exactly the kind of inter-disciplinary doctor that I needed.

There was no psychiatrist that I could see at the ER as far as I know. I had to get checked into the psychiatric facility in order to see one. So that was another dimension here where I was enthusiastic about going, and probably made the decision by the ER to send me there easier.

A thousand times over. I feel really lucky to work for Charlie. :-)

> My wife was able to substantiate this claim with my detailed timeline.

Sorry, my bad here. The timeline wasn't mine. It was Kait who had built it and took on the burden of sharing it with everyone she possibly could.

It is also worth pointing out that I have had (somewhat mild) psoriasis on my scalp since I was a kid. It is also an autoimmune disorder. My understanding is that having one increases your chances of having another.

I also have blood relatives with lupus and rheumatoid arthritis.

I asked my wife about it since she has more context on the chance encounter with a neurosurgeon who was ultimately responsible for the transfer into Brigham and Women's. She said there were two things of note that led the neurosurgeon to step in (according to the neurosurgeon):

Decompensating at an increasing and alarming rate, not typical from a psych perspective. Also not in a healthy young male with no history. My wife was able to substantiate this claim with my detailed timeline. (I had some emails and wrote a lot of stuff down, as is my nature, during this time.)

My left eye was "squinty."

Thank you for the kind words. :-) <3

Oh my, I'm so sorry to hear that. She'll be in my thoughts.

Yes! As I understand it, each dose I received (I got 3 of them) came from ~1,000 different donors. It was more expensive than my room and board at the hospital, and my room and board was not cheap.

Thank goodness for health insurance. (Which is very shallow gratitude since the system is broken in many ways. But this ended up not being a financial burden for us, which I am very thankful for.)

We did at least have a health care proxy and a power of attorney in hand.

Funny story (that I didn't include in the blog) is that I actually wound up in a psychiatric facility for a second time after I was in-and-out of Brigham and Women's on 3 separate occasions. I was in a much better state mentally and physically, and this particular facility (McLean Hospital) was way better than the first one I was in. The circumstances were different and I was happy to be there because things were still very rocky at home. And very dark. So my wife and I felt it better that I be in an in-patient facility at this point, which came right before my official anti-NMDA receptor encephalitis diagnosis.

Anyway, the funny story is that I showed up to McLean, after being transferred from Brigham and Women's, with a physical copy of my wife's PoA over me and a health care proxy. The charge nurse said it was the first time he had ever seen anything like that before.

Thank you for the kind words.

Trouble swallowing, jaw pain, dizziness, double vision (and more) were all things I experienced as well. At one point, my left eye was dropping significantly.

Not to say you had or have what I have. The symptoms are very non-specific.

Yes! No tumor. I've had a PET scan and a testicular ultrasound. I think that puts me in the idiopathic category for this particular case.

Wow, nfldb. Old school. Good times. I had so much fun with that project and the community of users.

That is an interesting take that I hadn't thought of. Thank you for that perspective.

I actually haven't been able to get the ED notes from that first ER visit yet. They are in a different system than Brigham and Women's, which made it super easy to read notes in their app.

Honestly I think just a heap of patience while I catch up with a couple months of doing essentially zero work. That would be the best.

I'm very lucky to have had that connection. I didn't even know I had it until it was there. So I'm lucky on another level there too.

I was put on a low dose of an anti-psychotic. I am in fact still on it. We just haven't gotten to tapering off of it yet. (Other medications have taken higher priority.) Tapering off all of my medications, which is the goal, will take quite some time.

In the moment, I very much welcomed the anti-psychotic. I would do anything to fix what was wrong with me. The problem is that the front-line treatment for anti-NMDA receptor encephalitis (IVIG and steroids) takes a minute to kick in. Moreover, you don't have the diagnosis until later. There was a point in time, before the positive CSF antibody test but after the abnormal MRIs, where multiple sclerosis was a possible diagnosis.

In any case, once I got out of the psychiatric hospital and into Brigham and Women's, an MRI is indeed what I had right away. And that's when the brain lesion was found. But! Not all cases of anti-NMDA receptor encephalitis have an abnormal MRI. Susannah Cahalan, for example, had two normal MRIs. Brain inflammation was only detected indirectly at first because of the "clock test"[1]. And they later did a biopsy on her brain to confirm.

In retrospect, yes. I think I could have done a better job of advocating for myself on my first ER visit and demanded to see a neurologist. But I didn't know what I didn't know, unfortunately.

[1]: https://www.encephalitis.info/news/brain-on-fire-susannahs-r...

Ooof, really sorry to hear that. I'm glad she ultimately got the treatment she needed.

In my case, the misdiagnosis up front was entirely reasonable. The generalized anxiety disorder diagnosis from my PCP made a lot of sense given what was happening. I hadn't had delusions yet at that point. It was... a mixture of panic attacks, night sweats, jaw pain and a greatly increased level of anxiety compared to my baseline.

My PCP did run a bevy of tests (chest x-ray, and took tons of blood) to try and rule out anything biological.

Given what was known at the time, I think my PCP did the right thing. And when my symptoms really escalated (delusions, suicidal ideation, falling and hitting my head), my PCP suggested going to an ER. And that's what we did.

I think it was the ER that really dropped the ball. Given the sudden onset of everything, the fact that they didn't get me in front of a neurologist is, in retrospect, really quite baffling. That's when I went to a psychiatric hospital, where I spent 3 nights.

I only got out of that hospital due to total luck. My neighbor was old college buddies with a neurosurgeon. (We had no idea about it. It just came up randomly when my neighbor was dropping my son off at home for us.) That was the critical connection because he ended up talking to the neurology department at Brigham and Women's, then talked to the psychiatric hospital and was the one who facilitated my transfer.

My wife tried to do it on her own but they wouldn't allow it because I had been medically cleared. She had to give 3 days notice to pull me out. Or otherwise, by default, I would see a neurologist after 2 weeks. According to the psychiatric facility.

I really don't know if I would have made it that long. The encephalitis wouldn't have killed me in that span of time, but I was in an extremely dark place.

I'm also really lucky that this is an autoimmune disorder that has a pretty objective diagnostic criteria: a positive antibody test in your cerebral spinal fluid. You "just: need to have your spine tapped to get that though. Fun times.

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/