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  AgentMasterRace
  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!)
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  cgh
  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.
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  bonsai_spool
  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/
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  jakobnissen
  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.
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  billjive
  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 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.
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  gwerbret
  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.
• quux0r
  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.
• greenimpala
  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.
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  sscaryterry
  Best of luck mate. Most of us take our health for granted.
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  jszymborski
  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.
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  freediddy
  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.
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  ZpJuUuNaQ5
  >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.
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  fleshmonad
  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
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  Munksgaard
  > [...] 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.
• riquito
  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
• sherr
  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!
• anon
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• vatsachak
  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
• anon
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• miguelxpn
  I'm glad you got diagnosed and the treatment is working. Sending you virtual hugs!
• tosh
  ty for this writeup Andrew, all the best to you
• loeg
  I'm sorry to hear it, and glad you seem to be on the mend with a positive prognosis.
• natas
  I wish you a fast and full recovery.
• anon291
  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.
• zengid
  Wishing you a full and fast recovery!
• ck2
  when I saw "NMDA receptor" I was immediately fascinatedI have long-covid and purposely take low-dose Dextromethorphan (just 15gm)because it acts as a NMDA Receptor Antagonistby blocking NMDA Receptors, it helps mitigate overactivation of chronic pain and fatigue pathwaysit sounds like Andrew was experiencing the exact opposite effects by aggravating the pathways* https://pmc.ncbi.nlm.nih.gov/articles/PMC7851375/* https://images2.imgbox.com/0b/d7/AKg9AJg6_o.png