10 ms·

I was recently diagnosed with anti-NMDA receptor encephalitis

• sscaryterry 5mo ago
  Best of luck mate. Most of us take our health for granted.
  • burntsushi 5mo ago
    Thank you. <3 It's been a trip. The worst thing that has happened, but also the best. It has definitely given me a new perspective on life, that's for sure. My favorite side effect is that I now love all foods. Prior to this, I was a rather picky eater. Now I love everything!
    • philipportner 5mo ago
      > My favorite side effect is that I now love all foods. Prior to this, I was a rather picky eater. Now I love everything! I feel like there's a burntsushi joke hiding in there somewhere. All the best Andrew.
      • burntsushi 5mo ago
        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/ https://coneyislandlunch.com/
        • vimwizard 5mo ago
          Man, the origin of your screen name is the same level of lore as Rust being named after fungi, and not corrosion. Love it! Glad you're in better health again. Been using your software for nearly 10 years spanning before and after my career started. Thanks for all the work you do in open source. Cheers
        • jcgrillo 5mo ago
          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.
          • burntsushi 5mo ago
            Yes! I just took my son there for the first time a few months ago (before the encephalitis hit).
            • jcgrillo 5mo ago
              Man that's awesome. That's motivation to get one of my vehicles in good enough shape for a day trip (I'm about 3-4hr north depending on choice of route). I have fond memories of Worcester, and of all the places I've been since I'd be most surprised if it's changed much :p
    • dbt00 5mo ago
      I've had some experience with situations like what you experienced in my family, and I just want to say how glad I am to hear that you had people in your corner to help you out when you needed it the most.
    • rustyhancock 5mo ago
      That maybe the steroids I'd imagine!
• jakobnissen 5mo ago
  This sounds horrifying. It’s one of those stories that makes me think in just how many ways our bodies or minds can break or malfunction in terrifying ways. Any one of us could, right now, carry a lethal tumor that hasn’t been discovered. Best of luck to you, and get well. I’m glad it didn’t get even worse before it was treated.
  • somenameforme 5mo ago
    CDC mortality tables [1] are kind of eye opening for those who don't realize how brief life is. Average age range on HN is probably in the 25-44 year old bracket. That bracket has an approximate mortality rate of 140/100k per year. HN has what, 5 million or so monthly users? So that means of all of 'us', it's expected that around 7,000 HN readers age 25-44, die each year. That's fairly close to 1 death per hour. [1] - https://www.cdc.gov/nchs/data/dvs/MortFinal2007_Worktable23r.pdf https://www.cdc.gov/nchs/data/dvs/MortFinal2007_Worktable23r...
    • klipt 5mo ago
      Your CDC figure is an average over all genders. Assuming hacker news readers are disproportionately men, the mortality rate is even higher, since men die younger than women on average.
      • deleted 5mo ago
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      • Sharlin 5mo ago
        On the other hand, my guess is that male HN readers are not a very representative sample in this respect. That is, they (we) are significantly less likely than average to engage in the type of risky behaviors that mostly explain the gender disparity.
        • tliltocatl 5mo ago
          A lot of gender disparity is cardiovascular disease being 50% more likely to be diagnosed in men than in women of same age, so not directly related to risky behavior.
• sherr 5mo ago
  Thanks for writing this. Perhaps a part of your therapy at the end. Also, a way to understand and recover. I hope all goes well for you!
• jszymborski 5mo ago
  I can't begin to imagine the pain and stress caused by those symptoms, but I am so very happy to hear the prognosis is quite good. A linked scientific article makes the case that this is a very new diagnosis, and increased awareness might help a lot of people, so if you are reading this burntsushi, thanks for being open about something deeply personal, I hope I would have had the courage to do so myself.
  • burntsushi 5mo ago
    Thank you. <3 There were lots of reasons that went into me posting this. First and foremost is that this is a disease of chaos that is prone to misdiagnosis. I want to shout this from the roof tops to spread awareness. I don't have a ton of reach, but I have some, and I want to use it to amplify things like this. Second is that I'm somewhat naturally open about these sorts of things. Third is I feel a responsibility to my projects and users. Fourthly is that it's just practically useful to have a link to send to someone when I reference this time period in my life. :-) > very new diagnosis Yes! Discovered in 2007. Wild. > so if you are reading this burntsushi, thanks for being open about something deeply personal, I hope I would have had the courage to do so myself. <3 <3 <3
    • mcspiff 5mo ago
      > Third is I feel a responsibility to my projects and users. I feel like this should be a bit of a two way street. Is there anything we can be doing for you? I see there's an option for GitHub sponsorship, would that still be your preference?
      • burntsushi 5mo ago
        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.
        • mcspiff 5mo ago
          I can only speak for myself, but I'm just glad you're still a member of these communities. Take care of yourself, and I look forward to many more years of learning from your code!
• tosh 5mo ago
  ty for this writeup Andrew, all the best to you
• vatsachak 5mo ago
  I'm using both csv and aho-corasick on my project! I wish you the best and I'm sure us Rustaceans are happy to help with anything
• deleted 5mo ago
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• miguelxpn 5mo ago
  I'm glad you got diagnosed and the treatment is working. Sending you virtual hugs!
• cgh 5mo ago
  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.
  • code_duck 5mo ago
    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 to death when you are very, very sure that's not the issue.
    • OkayPhysicist 5mo ago
      How did it take a year to diagnose diabetes? Are there symptoms of Type 1 that aren't downstream of blood sugar? I, some chucklefuck with some first aid experience, can figure out if someone is hypo/hyperglycemic by smell.
      • forlorn_mammoth 5mo ago
        Adult onset. It can come on slowly (as in over the course of a year). And many downstream symptoms include mood changes. Hard to know it is blood sugar related if you don't test blood sugar levels. Really glad you can smell it on people, smell is a powerful diagnostic tool that few people are trained on.
        • Scoundreller 5mo ago
          That’s the bit I don’t get: isn’t glucose testing by the health care system fairly common with any sort of “I don’t know what’s going on, let’s order some labs and see what comes back” screening/testing panel?
• bonsai_spool 5mo ago
  One thing that may be intriguing is that this is a relatively new diagnosis (first described in 2007). There's so much medicine to discover and we need to keep supporting a biomedical research enterprise that can find reversible treatments to disorders that would otherwise be difficult to treat (his symptoms, for example, would be thought of as a schizophrenia manifestation in another era) https://pmc.ncbi.nlm.nih.gov/articles/PMC2607118/ https://pmc.ncbi.nlm.nih.gov/articles/PMC2607118/
  • jr3592 5mo ago
    Yes, the biomedical world needs to go through the same boom that tech went through in the last 20 years. The problem is accessibility. Tech grew largely because of how accessible the technology is. Biomedical research is still very difficult to get into, and as a result seriously curtails the potential progress we as a society could make. I don't know what the solution is but there's got to be an easier way to tinker, test, explore, and play around with biomedical things (cells, viruses, etc.). Ideally it would be a purely software world where we replicate everything down to the DNA level so that you can test and play around with potential solutions...
    • giantg2 5mo ago
      "the biomedical world needs to go through the same boom that tech went through in the last 20 years." Not going to happen with all the regulation. Plus, I think half of us techies got into it for games and boobs (bypass parental controls). Not a lot of that same adolescent motivation in that field.
      • fragmede 5mo ago
        Yeah, but the culture surrounding computers now isn't the same as when whenever you grew up. The last few decades of tech didn't have ChatGPT to contend with. These days, going into medicine looks a lot more future proof than getting a CS degree.
    • bonsai_spool 5mo ago
      > Yes, the biomedical world needs to go through the same boom that tech went through in the last 20 years. Why do you think that isn’t happening? So many comments here make broad claims about fields where the poster isn’t familiar. Being a programmer does not make one knowledgeable about other specialized fields
• zengid 5mo ago
  Wishing you a full and fast recovery!
• ck2 5mo ago
  when I saw "NMDA receptor" I was immediately fascinated I have long-covid and purposely take low-dose Dextromethorphan (just 15gm) because it acts as a NMDA Receptor Antagonist by blocking NMDA Receptors, it helps mitigate overactivation of chronic pain and fatigue pathways it sounds like Andrew was experiencing the exact opposite effects by aggravating the pathways * https://pmc.ncbi.nlm.nih.gov/articles/PMC7851375/ https://pmc.ncbi.nlm.nih.gov/articles/PMC7851375/ * https://images2.imgbox.com/0b/d7/AKg9AJg6_o.png https://images2.imgbox.com/0b/d7/AKg9AJg6_o.png
• deleted 5mo ago
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• Munksgaard 5mo ago
  > [...] Since I had been cleared physically, getting out of the psychiatric hospital quickly to see a neurologist proved difficult. This was the single point, in retrospect, where our health care system let me down. It took a lucky connection with someone who happened to be a doctor to get me out of the psychiatric facility and into the neurology department at Brigham and Women’s Hospital in Boston. That sounds scary. As someone without any experience with psychiatric institutions or the US health system, I'm curious what people's views are on this.
  • memco 5mo ago
    Won't weigh in on psychiatric care, but I will say from experience that everyone should look into both an advanced healthcare directive and an advanced psychiatric care directive: these are documents that authorize someone else to have input into your care if you are unable to do so yourself. Psychiatric care is considered separately so even though a medical health directive was in place we were stuck and could not have input into care even though we tried. Set this up before needed because in an emergency it may be too late and care providers are limited in what they can say and what they will do without that. Consult a lawyer. Participating locations only. etc. etc.
    • burntsushi 5mo ago
      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.
• fleshmonad 5mo ago
  Glad he had connections to get out of the psychiatric institution. Thinking of all the unfortunate people without the means being incarcerated there with their misdiagnosis, getting put down with antipsychotics
  • burntsushi 5mo ago
    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-race-against-time/ https://www.encephalitis.info/news/brain-on-fire-susannahs-r...
    • carlsborg 5mo ago
      Intriguing... "After months of misdiagnoses Dr Souhel Najjar, employs a test asking Susannah to draw a clock. Instead of the customary clock face, her condition led her to draw all the numbers 1 through 12 on the right side of the clock. This was the breakthrough moment; it was this clock drawing that enabled Dr Najjar to understand that the right side of Susannah’s brain was inflamed, further test revealed this inflammation was a result of anti-NMDA receptor encephalitis, initiating her path to recovery"
• loeg 5mo ago
  I'm sorry to hear it, and glad you seem to be on the mend with a positive prognosis.
• anon291 5mo ago
  A bit off-topic, but I feel like humanized monoclonal antibody treatments are so under-appreciated today despite showing efficacy against a broad class of diseases, infectious, auto-immune, and even some cancers. Absolutely amazing class of drugs IMO.
  • burntsushi 5mo ago
    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.)
• freediddy 5mo ago
  The first thing I would do with any sort of weird issue remotely associated with my brain is to get an MRI. I would pay for it out of pocket if my doctor denied it or said it was psychiatric. Trust no doctor 100%, especially when they dismiss your symptoms as hormonal or psychiatric or anything else that doesn't go through a thorough examination with all available technology. This is where AI like ChatGPT shine because they won't just dismiss you.
  • tsol 5mo ago
    Not sure why this was down voted but there's truth to this. I quit an SNRI antidepressant twelve years ago and for ten years I had horrible migraines, inability to form sentences, constant anxiety, low motivation, and other symptoms. Doctors just diagnosed it as depression and me having problems. I knew something was wrong and I suspected it had to do with withdrawal from my old antidepressant. I read online and found others saying something similar. Gemini was able to help me confirm with and provide resources from specialists about this because the average psychiatrist knows nothing about this. Finally I had a name for my issue-- protracted SNRI withdrawal syndrome. Trying to get off the medication too quick put me into some kind of continuous withdrawal. After confirming this I got back on the old medication and slowly reduced the dose this time.. I feel better than I have in 10 years. Doctors still don't understand it and sometimes when I mention it to one(I have a few in my family)they just say "that's not supposed to happen". Never put your health solely in another person's hands. Utilize every resource available to you, even the most educated doctor in the world cannot know all there is to know about their field
    • jongjong 5mo ago
      The human body is an incredibly complex machine. The doctor may be an expert with particular conditions, but at the end of the day, you are the #1 world-leading expert when it comes to your own body. You're the only one who knows what's normal and what's abnormal and to what extent.
  • sevenseacat 5mo ago
    I went to see an eye specialist recently for vision problems, and that was the first thing she did - sent me for an MRI of my brain. First time in a wub-wub-wub machine, that was an experience! (It took two months for my MRI appointment, but hey at least it was free, thanks Australia?)
• gwerbret 5mo ago
  NMDA receptor encephalitis is usually associated with a particular ovarian tumor, so the first thing I did on seeing this article was to check if the author is male or female (he's male). It is the habit of certain cancers to present with bizarre symptoms (so-called paraneoplastic syndromes) including psychosis as in this case, and often it can be months before someone thinks to look for cancer. I'm glad the author's okay.
  • burntsushi 5mo ago
    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.
• riquito 5mo ago
  I whis you the best, you teached me a lot with your blog posts and code, and your software had an impact in how I use computers. You are probably the only developer alongside Torvalds that my wife knows by name (well, nickname) since whenever you do something cool I feel the urge to share my excitement with her
• ZpJuUuNaQ5 5mo ago
  >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 psychological symptoms, nor was there any obvious biological explanation for the physical symptoms at the time. This was only the beginning. Interesting, I had similar symptoms 5 years ago, including trouble swallowing which in itself induced a sort of panic. Also, I have experienced 6 "attacks" (not sure whether a panic attack is the right name) in two days, that felt like all my limbs were numb (with that tingling feeling you get when you keep your limb in an awkward position for too long) and tightly wrapped in duct tape, accompanied by rapid breathing, fast heart rate and dizzy vision. I wasn't diagnosed with anything specific and it went away on its own, but later the same year I started feeling occasional heart flutters as if my heart was going to jump out of my chest. Got tested and was diagnosed with a 2nd degree AV block. To this day, I have no idea what caused this and whether the two events were even related. Life can slap any one of us in the face in countless ways. Creatively vicious. Glad your prognosis is quite good. Wishing you a fast and full recovery.
  • burntsushi 5mo ago
    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.
  • TomasSedovic 5mo ago
    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 next time). Absolutely not suggesting that's what it was, just that it is what it could be too (or many other things — auto-immune diseases in particular can be really broad and nasty). Sushi, I'm so glad you're doing better. Some of what you said (including just writing about it for awareness and sharing) resonates with my MS experience. I'm sorry you've experienced this and I hope things will keep looking up! <3
• natas 5mo ago
  I wish you a fast and full recovery.
• AgentMasterRace 5mo ago
  My ex has mast cell activation syndrome. We would have to call for an ambulance 3-4 times a month because some days eating a grape could cause her to go into anaphylactic shock. She was allergic to whatever her body felt like at any given time. She was misdiagnosed/undiagnosed for 18 years. I was baffled by this, and I myself have spent numerous hours down the rabbit hole of nootropics, and had a DNA test and was researching myself and how things work and how supplements affect your body and such for sometimes 12 hours a day. (Chronically unemployed, chronically ill.) We got her a DNA test and I went to work researching everything and comparing the possibilities to her symptoms, we tried countless different supplements that could help... And eventually one did, it wasn't a cure but it was a relief she had never felt before. That was Quercetin, which is a mast cell stabilizer. It took about 2 years of research and trial and error to find some relief. We took our findings to the doctor and finally got a referral to an internal medicinist who promptly after hearing the symptoms and what has helped diagnosed her and she was out on a proper mast cell stabilizer. She went from being in bed 20 hours a day to being able to fully enjoy life. (Sadly, without me though!)
  • jujube69 5mo ago
    What's was her daily Quercetin dose? Trying to compare notes.
  • deleted 5mo ago
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  • elliotbnvl 5mo ago
    I just learned I have this as well (not as severe). Quercitin helped me. I am taking I think 1600mg (with bromelain) per day. How much was she taking, and what is the mast cell stabilizer that helped, if you don't mind my asking? I've been dealing with my symptoms for 17 years this year and Quercitin + Zyrtec + Pepcid is the first thing that's made a dent in it. I started a few weeks ago and it's been amazing but I'm not experiencing full relief yet. This was the combo Claude recommended I start with for a trial, one message after I told it my symptoms. No doctor has ever been able to help.
    • 5mo ago
• quux0r 5mo ago
  Andrew is truly such an inspiration. For him to have been still delivering for the open source community during all this really goes to show that you never know what someone else is dealing with.
• billjive 5mo ago
  Sorry to hear this, thank you for publishing your account. I first found you years ago from your nfldb project: https://github.com/BurntSushi/nfldb https://github.com/BurntSushi/nfldb and since then have used xsv and ripgrep. Also, thank you for participating in the clinical trial. I pivoted my tech career several years ago to focus on that industry (the tech isn't great, I'm trying to help that). Along the way I've learned how important it is to participate in this research, it makes a massive difference so thank you.
  • burntsushi 5mo ago
    Wow, nfldb. Old school. Good times. I had so much fun with that project and the community of users.
    • billjive 5mo ago
      Yeah, almost pivoted to fantasy sports! Clinical trials are more interesting :)
  • dprice1 5mo ago
    I came here to say nearly the same. I used xsv SO MUCH at my last job, because the intermediate format of everything in the particular project was CSV, and I just could plow through everything using it. And of course BurntSushi/toml is in various go projects I have worked on. I'm glad that get to carry on doing whatever makes you happy, and for your whole family.
• greenimpala 5mo ago
  My wife had anti-NMDA negative Encephalitis two years ago after suffering severe seizures out of the blue - her diagnosis in retrospect is NORSE (new onset refractory status epilepticus). She was put into an induced coma for 2 months, it took a long time before they realised it was encephalitis. Whilst she survived, her recovery is still ongoing. She was 32 when it happened and will never work again due to her brain injury and ongoing epilepsy.
  • burntsushi 5mo ago
    Oh my, I'm so sorry to hear that. She'll be in my thoughts.
• abstractbill 5mo ago
  It's nice to see peoples' success stories with diagnoses. I've been suffering from something for more than 20 years now. I was healthy until 2005. Then it seemed like I got sick with some kind of virus and just... never got better. I have unpredictable good stretches and bad stretches. During my bad stretches I can't get out of bed. I've mostly given up on the idea of a diagnosis myself, after seeing dozens of doctors over the years, with the most positive interactions being Stanford researchers telling me I'm a really "interesting" case.
  • ChrisMarshallNY 5mo ago
    I've seen that happen with Lyme Disease, and with Mono. Autoimmune disorders are notoriously difficult to diagnose. In the 1980s, AIDS was like that. All these healthy, young people, just started getting these diverse horrorshow problems, then died.
    • yesitcan 5mo ago
      [flagged]
      • wetpaws 5mo ago
        [dead]
  • jelsisi 5mo ago
    I'm in the same boat, have you tried seeing an integrative doctor? They can usually at least help extend the good periods.
• glerk 5mo ago
  I am glad you were able to find the root cause and get treatment, and sorry you had to go through this. I hope we will soon remove “psychiatry” from the domain of medicine completely and start addressing actual biological issues directly.
  • burntsushi 5mo ago
    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.
• simianwords 5mo ago
  I read his comment on how his wife was supportive and now gives me perspective on what a partner does and what one can expect from them. I’m not able to articulate it but it’s nice to see such a profound support.
• jcgrillo 5mo ago
  Glad you're getting excellent care and on the mend. Your work is an inspiration, wishing you all the best.
• deleted 5mo ago
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• archonis 5mo ago
  Really glad you finally got a correct diagnosis, and thank you for the tools/utilities you've contributed. My early rust skills benefitted significantly from having read your code! Good luck and good health.
• tsoukase 5mo ago
  Very rare disease, expected to be misdiagnosed as psychiatric. I admit I would (neurologist here) But you were luckily treated by an excellent neurologic center. The lesson learned is that there are rare diseases (<1/10.000-100.000) but as they are so many, they form an important minority next to common ones (1/100-1000). Just don't forget them when data don't fit well. Such estimations is a hard dexterity of doctors that cannot be rivalled by AI.
  • burntsushi 5mo ago
    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."
    • burntsushi 5mo ago
      > 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.
  • rendaw 5mo ago
    I don't mean direct this specifically at you, but aren't there databases that can look up diseases by symptoms? Are doctors not trained to consult those, maybe after ruling out common causes? Why is forgetting relevant in this context? I'm asking because I've had frequent encounters with doctors whose process seems to be, literally, "remember if there's anything like the described symptoms that I learned in medical school" which, if they were somewhat older, was probably 30+ years ago.
    • burntsushi 5mo ago
• arjie 5mo ago
  IMHO if you have a sufficiently empirical bent of mind, you are both more equipped and more invested in a good diagnosis and analysis of your own conditions. I have a personal EMR system that I run for the family and I get as much data as I need to tackle health issues. If you do, it is important to maintain epistemic hygiene: you need to correctly consider base rates, false diagnoses, and so on. If you are able to do these things, it's worthwhile to record everything you want: full body MRIs, CT scans of the head, all your X-rays, your blood records and so on. Other countries are easier to get these in, but even in the US a full body MRI is under $2k, Ulta will test your blood for you, and so on. You can't get most medication here easily because it is prescription-gated[0], but many things are available in India (where I'm from). Neurological conditions are a pretty big risk, because self-analysis is using degraded machinery at that point, though. Admittedly, a hole in the way I handle things. This is another one of those situations where it is valuable to have a wife. 0: Almost all self-analysis encounters the problem that a third-party to the interaction is the one usually paying, and so most players cater to that
  • dnnddidiej 5mo ago
    What is an EMR system. Im experimenting with a repo of medical data about me and claude.
    • arjie 5mo ago
      Just the industry term for what you’re building. Electronic Medical Records / Electronic Health Records. There’s some subtlety with what they’re doing that makes this more an EHR system (cross practice patient record rather than single practice patient record) but I’ve named it what I’ve done.
• tptacek 5mo ago
  Holy hell. Those symptoms, that clinical experience, that had to have been completely terrifying. Very glad you're on the mend, and that you got a straightforward (if weird) diagnosis. Wow.
  • burntsushi 5mo ago
    Thank you for the kind words. :-) <3
• deleted 5mo ago
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• est31 5mo ago
  Horrible to hear this news. Neurological diseases are the worst because we understand so little about them and usually there is no cure, just management. What have your experiences been with using AI for medical advice? Especially for such rare diseases I suspect that very little shows up in the training data. Personally I'm using AI only for work and only recently started using it for non-work non-coding stuff too.
  • burntsushi 5mo ago
    > 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.
• jsilvers 5mo ago
  Back in 2007, I was diagnosed with Churg-Strauss syndrome, renamed to the pithy Eosinophilic Granulomatosis with Polyangiitis (EGPA). It affects about 3 out of every 100,000 people, so rare. At the ER, I was told maybe I had tuberculosis. Then they thought it could be cancer. Then they thought maybe HIV. A few weeks later after being hospitalized because it had become progressively worse a pulmonologist correctly diagnosed it. Autoimmune diseases seem notoriously hard to pinpoint. Churg Strauss is a syndrome, meaning it's a constellation of symptoms. Some organs were permanently damaged, but I'm doing well and haven't had anymore flare ups. Glad this author shared his experience and that he's doing better.
• user395929935 5mo ago
  NMDA receptors, and their modulators like Sarcosine and Glycine, have been a topic of interest of mine, specifically regarding schizophrenia. I have a blog post compiling all my research here: https://www.howonplanetearth.com/nmda-receptor/ https://www.howonplanetearth.com/nmda-receptor/
• dpc_01234 5mo ago
  Sad news. Best wishes!
• storus 5mo ago
  I am wondering how many of these originated from Covid messing up the weakest parts of the body forcing generation of autoantibodies against them by the immunity.
  • burntsushi 5mo ago
    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.
• VoidWhisperer 5mo ago
  > Thank you to my friends, family and doctors as well. Their support during this time was unwavering and I’m not sure what would have happened without them. “Nothing good” is what a nurse said when I posed that question to her. I've always been told (and this has been true over the 4 or 5 times I've been hospitalized in my life) that having someone there for you, to support you and also to serve as your 'patient advocate' (so helping making sure all of the questions are asked of the doctors and stuff like that) has a definite positive effect on medical outcomes. In my cases, it was my family filling this role.
• joaomoreno 5mo ago
  Thanks for sharing, Andrew. This must've been a nightmare for you. I am happy things are going the better way now.
• komali2 5mo ago
  > The problems with balance and the overwhelming nature of my psychological symptoms eventually led me to fall and hit my head. This in turn led myself and my wife to decide that I couldn’t be safe at home. And that brought us to my first emergency room visit. It was baffling to me that it took a fall and hit on the head before the author went to the hospital, until then I saw they went to a hospital in Boston. So, American. It's tragic how the broken American healthcare system is holding back innovators and global contributors.
  • burntsushi 5mo ago
    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.
• Ecko123 5mo ago
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• dzonga 5mo ago
  glad OP has recovered. modern medicine is truly marvelous. my wish is poor countries catch up because people die unnecessarily or are misdiagnosed & fxxkd for life.
• williadc 5mo ago
  His manager deserves the thank you. If someone started exhibiting the issues described in this post at any of my employers past and present, I suspect they would figure out how to get rid of them.
  • burntsushi 5mo ago
    A thousand times over. I feel really lucky to work for Charlie. :-)
• dbancajas 5mo ago
  @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 the floor. She developed language problems. So she knew what she wanted to say but couldn't get the words out. My mom and I thought it was mild stroke. Over the following weeks she developed seizures, required a feeding tube and ventilator support, and is currently undergoing treatment in Cebu Doctor's Hospital, Philippines. If anyone here has experience with autoimmune encephalitis, patient advocacy groups, research programs, financial assistance resources, or treatment centers that might be helpful, I would be grateful for any suggestions. My family has also put together a fundraiser to help cover her ongoing treatment costs if anyone would like to learn more. We'll provide weekly updates and full transparency. Mods, I hope you allow this link: https://www.gofundme.com/f/help-save-rowenas-life-from-autoimmune-encephalitis https://www.gofundme.com/f/help-save-rowenas-life-from-autoi... If not, my email is in my profile and you can DM me. I can't post pictures of her with her current state because I don't have consent. The one picture I have of her current state is also censored.
  • burntsushi 5mo ago
    Your profile seems empty. I'd be happy to reach out privately if you can provide a way to do it. :-)
• NotGMan 5mo ago
  >> "While autoimmune disorders don’t have a known cure...." Look up keto, carnivore and juice fasting communities on Youtube. Extreme dietary changes fixed many people from "uncurable" illnesses. Can take 3 to 12 months though.
• insaider 5mo ago
  I wonder how close this disease, and the similar ones in the comments, are to a general 'chronic fatigue sydnrome' diagnosis is. Which I've been dealing with for a decade. Definitely a strong autoimmune component to it... In case this might resonate with someone but from the 100s of tests i've done, the most significant result for me was a 5x normal renin, which led me to eventually try fludrocortisone, the first time i finally felt 100% relief but only for a couple of days before sliding back into fatigue... Count yourself incredibly lucky OP that you both got a diagnosis and also have such support around you. It's tough out here
  • babhishek21 5mo ago
    A decade of dealing with CFS sounds like absolute hell. I saw a close friend decline from a 90%-ile athlete to having trouble getting out of bed within a span of 2 months, and it was heartbreaking. This is someone I looked up to in the gym, went climbing with, went on hikes with. Living in Spain, he did have a hard time getting a proper diagnosis, with doctors eventually settling on ME/CFS. It's been 2 years now and he is slowly on his way back to being functional; went back to his job and he can even do light exercise once a week now. I am going to ask him if he was prescribed corticosteroids as part of his regime. I do remember during his early tests (I know because I accompanied him) that he did test positive for Mononucleosis antibodies, but he doesn't remember showing any symptoms at that time.
    • insaider 5mo ago
      Thanks man, yea I also have mononucleosis antibodies which I think caused it (EBV IgG and IgM) which I think was the trigger for me (Glandular fever). Seems like that virus in particular lingers and reactivates in many people. My current line of research is into treatment for that, I've tried all the usual antivirals but they don't do much, but there's several new actual vaccines being developed which I'm trying to get into the trials for (in Australia). Would be keen to know more about his story, thank you
      • babhishek21 5mo ago
        Just sent him this thread! > Seems like that virus in particular lingers and reactivates in many people. Scary cuz it spreads from kissing / sharing fluid containers :O
• stanleydupreez 5mo ago
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• RomanVoropaev 5mo ago
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• mtlmtlmtlmtl 5mo ago
  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 psychiatrists are woefully bad at considering somatic explanations for symptoms. You definitely got very lucky.
  • burntsushi 5mo ago
    So lucky.
    • mtlmtlmtlmtl 5mo ago
      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.
      • burntsushi 5mo ago
        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.
• john_saptra 5mo ago
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• BrannonKing 5mo ago
  The thing with all these autoimmune diseases: they have the same foundational problem. Their is something in the blood that doesn’t belong there and it resembles some part/cell of our body. Our body builds white blood cells to destroy this thing and inadvertently destroys part of the body. The important questions: what is it and how is it getting into the blood? The most likely way it gets into the blood is through the digestive track. Some possible mechanisms: 1. Some detergent or similar chemical (e.g. PFAS is a solvent) dissolves the food (or the oil carrying the food) into water. The stomach pulls water back into the blood stream, bringing dissolved things with it. 2. There is some damage to the stomach or intestinal lining, stemming from physical injury, things getting stuck (lack of fiber), acid damage, some other chemical destroying mucus lining, etc. 3. You also have some autoimmune damage on your intestines. 4. You eat certain foods that require a symbiotic digestion with gut bacteria, but lack that bacteria or have killed it with eating preservatives or pesticides or artificial sweeteners, etc. The undigested food makes it to the larger absorption holes at the end of the intestinal run. It’s also possible that a brain injury caused some brain cells to end up in the blood stream. Normally, though, the body has a mechanism to avoid attacking its own cells, the CD47 mechanism. Maybe that can become damaged or malnourished in some way. I’m sure that there’s a host of other things that can go wrong with that.
  • sneak 5mo ago
    It’s fortunate that you can’t properly spell basic medical terms so that nobody will mistake this for professional advice from a knowledgeable source.
  • mog_dev 5mo ago
    You write all these so confidently I hope you are ready for your nobel prize
    • Culonavirus 5mo ago
      > Their is something
• dystroy 5mo ago
  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.
  • burntsushi 5mo ago
    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.
• clovevisa 5mo ago
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• trevor-e 5mo ago
  What an ordeal, this stuff really scares me, like the post about the Gitlab founder having to diagnose and treat himself. Great to hear you are recovering. If you find yourself in Cambridge I will gladly buy you a beer for how much rg has helped me.
  • burntsushi 5mo ago
    <3
• tych0 5mo ago
  Hey Andrew, I've been an admirer of your work for a long time. Sounds awful, glad you are on the mend.
• cstaszak 5mo ago
  Thank you for writing this. As a fellow traveler on the autoimmune encephalitis (AE) journey, it’s rare to see this condition mentioned outside a specialist neurology setting. Three years ago, I was diagnosed with LGI1 autoimmune encephalitis (and yes, for those following along, AE comes in several varieties). While I never experienced the degree of psychiatric symptoms you unfortunately had to endure, I have a sense of what this disease can do and share a similar experience of testing and treatment. For anyone unfamiliar with AE, imagine your immune system spontaneously deciding to run an ablation test on the live neural network inside your skull. Unsurprisingly, there may be some glitches. My first symptoms were brief “twitches” that appeared simultaneously in my left arm and face. I later learned they were seizures. An urgent care physician prescribed a muscle relaxant and sent me on my way. Fortunately, I was persistent—and it helped immensely to have a supportive and equally persistent spouse. I was able to get in front of a neurologist quickly, and based on my symptoms she immediately suspected AE. By sheer luck, it was her area of expertise. I was hospitalized immediately and underwent ten days of intensive treatment. That rapid diagnosis and intervention likely spared me a much more difficult recovery and outcome. Today, life is mostly back to normal. I’ve been able to discontinue both anti-seizure medications and scheduled infusions. I still experience more physical and mental fatigue than I did before AE, and there are memory gaps around the time of my diagnosis. The disease also launched me into an ongoing cancer and B-cell surveillance journey. These days, I have to pace myself and consciously manage my energy in ways I never had to before. Another challenge is living with the immunosuppression that resulted from treatment. Yes, I’m still the person masking up in our supposedly post-pandemic world. For what it’s worth, I’ve found creatine helpful for mental focus and clarity (admittedly, a sample size of one). Wishing you the very best, and I hope the CIELO trial delivers positive results for all of us.
  • burntsushi 5mo ago
    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. ----- 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?)
• hereme888 5mo ago
  Fascinating. As a young PCP, I wasn't familiar with the condition. For professional info on the disease: https://www.openevidence.com/ask/03586d88-9477-46f9-9089-9a7b6a47454a https://www.openevidence.com/ask/03586d88-9477-46f9-9089-9a7...
  • burntsushi 5mo ago
    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.)
• poopdick 5mo ago
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