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.
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.
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.
> including an appalling “it’s all in your head” from her family MD at the time
Oof. That one resonates so much for me - even living in a country with far better healthcare.
There's a term I dislike but is apt: medical misogyny. Basically it's, "systemic, conscious, or unconscious gender biases [which] affect how a patient is treated by the healthcare system."[1]
Systemic in particular is that basically the vast amount of knowledge amassed in the medical sciences has come from studying men. Comparatively little for those not assigned male at birth.
One of my kids has complicated health issues, pretty much from the time they hit puberty. If they hadn't had me (someone born with a penis) advocating for them and attending most medical appointments throughout their teenage years I'm pretty sure they would be dead now.
My most appalling memory is a gastroenterologist who patronisingly told my kid with a diagnosed anxiety disorder which exacerbated awful gut pain from irritable bowel syndrome that, "If you weren't anxious all the time you wouldn't be in so much pain." We both had a good cry in the car park after that appointment. It certainly set treatment of their IBS back a couple of years at least.
(Fortunately after a string of bad ones, we found a GE that treated them with compassion, and not as a gastrointestinal tract with an annoying human around it.)
Whew, yeah, touched a nerve there. So, medical misogyny. It's a thing.
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)
> [...] 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.
if you ever want to read what happens when your brain breaks and you don't have a neurologists number in your back pocket , feel free to peruse the subreddit r/antipsychiatry
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
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.
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.
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?)
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.
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
>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.
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
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.
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!)
I was on a similar path, but way less severe. I’ve become intolerant to eggs and chicken (and a bunch of other stuff) for some completely unknown reason. Over the course of the past 5 years, my overall health got progressively worse and worse.
I tried all sorts of different things, but couldn’t nail down a pattern for years. Even worse, some days I could tolerate something and others it would blow me up. It wasn’t until I started telling Claude literally everything I consumed and how I felt that it dialed into histamine response triggering mast cell activation.
I started to realize that a lot of “low histamine” foods either build up histamines as they age (so leftovers kill me) and some “low histamine” foods actually cause the body to naturally liberate histamine (essentially mimicking high histamine foods).
It’s extremely hard to get a diagnosis because the triggers are seemingly random and don’t always correlate with common buckets.
Ooh, thanks for this. I'm going to try quercetin for my histadine sensitivity in red wine, which causes a skin reaction. I thought it was the sulphites, but after trying older wines (which have fewer sulphites), it made it worse. So I've narrowed it down to histadines. The dilemma here is that wines tend to improve with age, but they contain more histadines.
Loratadine plus famotidine worked for years for me (I have mastocytosis).
Switching to a keto diet helped way more, though. I still get flushes, rashes, etc., but the severity has gone down to the point they are random annoyances that go away as opposed to medical events.
Cromolyn and/or ketotifen are the big guns for mast cell disorders, though.
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.
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.
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.
88 comments
[ 3.0 ms ] story [ 82.4 ms ] threadBest of luck to you, and get well. I’m glad it didn’t get even worse before it was treated.
I wish you the best and I'm sure us Rustaceans are happy to help with anything
I’m not entirely sure why I’m mentioning this, other than I sympathize deeply with your wife. What an absolute ordeal.
Oof. That one resonates so much for me - even living in a country with far better healthcare.
There's a term I dislike but is apt: medical misogyny. Basically it's, "systemic, conscious, or unconscious gender biases [which] affect how a patient is treated by the healthcare system."[1]
Systemic in particular is that basically the vast amount of knowledge amassed in the medical sciences has come from studying men. Comparatively little for those not assigned male at birth.
One of my kids has complicated health issues, pretty much from the time they hit puberty. If they hadn't had me (someone born with a penis) advocating for them and attending most medical appointments throughout their teenage years I'm pretty sure they would be dead now.
My most appalling memory is a gastroenterologist who patronisingly told my kid with a diagnosed anxiety disorder which exacerbated awful gut pain from irritable bowel syndrome that, "If you weren't anxious all the time you wouldn't be in so much pain." We both had a good cry in the car park after that appointment. It certainly set treatment of their IBS back a couple of years at least.
(Fortunately after a string of bad ones, we found a GE that treated them with compassion, and not as a gastrointestinal tract with an annoying human around it.)
Whew, yeah, touched a nerve there. So, medical misogyny. It's a thing.
[1] https://australiainstitute.org.au/report/medical-misogyny-in...
Reminder that he is the one who is ill, not his wife.
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/
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://images2.imgbox.com/0b/d7/AKg9AJg6_o.png
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.
This is where AI like ChatGPT shine because they won't just dismiss you.
(It took two months for my MRI appointment, but hey at least it was free, thanks Australia?)
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.
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
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
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!)
I tried all sorts of different things, but couldn’t nail down a pattern for years. Even worse, some days I could tolerate something and others it would blow me up. It wasn’t until I started telling Claude literally everything I consumed and how I felt that it dialed into histamine response triggering mast cell activation.
I started to realize that a lot of “low histamine” foods either build up histamines as they age (so leftovers kill me) and some “low histamine” foods actually cause the body to naturally liberate histamine (essentially mimicking high histamine foods).
It’s extremely hard to get a diagnosis because the triggers are seemingly random and don’t always correlate with common buckets.
Sad to hear that. You sound like a keeper. Anyway, are you free this weekend? ;)
Switching to a keto diet helped way more, though. I still get flushes, rashes, etc., but the severity has gone down to the point they are random annoyances that go away as opposed to medical events.
Cromolyn and/or ketotifen are the big guns for mast cell disorders, though.
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.
I'm glad that get to carry on doing whatever makes you happy, and for your whole family.