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?)
I was extremely lucky and the gap between first physically detectable symptoms (faciobrachial dystonia (face), arm twitches) and initial treatment was only a week. My initial treatment was a hero dose of IV steroids (as you know to shut down the immune system) and plasmapheresis (filtering antibodies from my blood). I had a relapse ~5 months later, resulting in another (shorter) hospitalization where more steroids and IVIG came into the mix. I received Rituximab and IVIG infusions every six months for first two years. I was also on anti-seizure meds for most of this until cleared by an EEG. My infusion schedule is now being dictated by B-cell labs - they've been so low that I haven't needed any (yet). I've also been doing the periodic rounds with CT and other scans to make sure that if cancer is the cause of my AE, we can find it early and deal with it. Feel free to hit me up at my username at gmail if you'd like to talk further.
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.
> 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.
I can understand being hesitant about sharing the details of why you wanted the antipsychotics. It sounds like this is your first(hopefully last!) brush with psychotic/dissociative states of mind. Though I can't pretend to know what it was like for you, I can tell you I've been in similar situations. I've had several cases of acute psychosis caused by drugs(sometimes stimulants, sometimes synthetic cannabinoids) and/or sleep deprivation in the past. I also experimented heavily with all manner of psychedelic and hallucinogenic drugs in my early 20s, and I'm a severe hashish addict(currently 2.5 years in remission thanks to a moderation oriented treatment program I designed myself). It can be profoundly and existentially scary. You encounter parts of your psyche that you may never have met before, and reality breaks apart at the seams. You truly learn the extent to which your perceptions, thoughts, and even intentions are at the whims of implementation details in your brain. If you want, I could share some concrete anecdotes from my own experiences. But the main thing I want to say is give it time. These things must be processed, and it takes time, but it will get easier. And in time you will emerge with a better understanding of what it is to be human, and of yourself.
As to your comment on LSD, I support that. Sanity is taken for granted, until you temporarily lose it. If at some point you change your mind on exploring psychedelics, my advice would be to ditch LSD and go with psilocybin mushrooms instead, for a number of reasons.
Psychedelics very rarely cause actual psychosis, but LSD should have a higher risk than most, because unlike psilocin(the active compound in mushrooms, which psilocybin is converted into), LSD has non-trivial activity at dopamine receptors, and importantly the D2 receptors. LSD is in some sense the opposite to an antipsychotic in that it acts on the same receptors as antipsychotics, but with an opposite effect. Drugs that act as agonists on D2 receptors(usually Parkinsons meds) are well documented to cause psychosis in some people, as are stimulants like amphetamine which increase synaptic dopamine levels.
Psilocybin mushrooms are also pretty safe in that as long as you've identified the mushrooms correctly, you know what's in them. LSD on the other hand, more often than not is not actually the "original" LSD these days, but some LSD analogue. Usually it'll be something very similar in structure and effect to LSD, but it'll still be poorly studied compared to LSD. There are also drugs which are substantially different from LSD being sold on blotter paper as LSD, and some of these can be quite toxic(25i-nbome), extremely long lasting(DOB, DOM), or both(bromo-dragonfly).
Psilocybin is also free of course, since it's bound to be growing someplace near you in vast amounts, though the specific species depends on where you live.
And finally, it's much easier to take psilocybin in small doses. I always recommend people do this when trying psychedelics for the first time. Try a sub-threshold dose first, just enough to feel a little "weird". See how it feels, decide whether to do more next time, or stop, etc. It's possible to this with LSD, but it's much trickier, because LSD usually comes on this tiny little blotter paper. You can cut it up into smaller pieces, but there's no guarantee the drug is evenly distributed across the paper, and it's also impossible to be completely sure how much drug is on the blotter in the first place, unless you made them yourself. Mushrooms on the other hand are usually measured in grams; much easier.
But yeah, I'm not recommending you do psychedelics. Especially not any time soon, while you're still healing. It's always good to have a stable baseline before you go stirring the pot, so to speak.
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. :-)
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.
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 :-(.
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.
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.
> 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.
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.)