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.
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.
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.
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.
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?
OP mentioned being told he was just worrying by a psychiatrist. They're used to seeing all sorts of psychosomatic issues caused by stress and anxiety. The old 'think horses not zebras' puts blinders on, especially when there's also claims that the US health system over-tests for things.
I honestly hate the US medical system for this. Basically you get scolded for not being proactive and ignoring symptoms, but if you are proactive and even slightly worried about something they treat you like a hypochondriac.
It's been super eye-opening to me as an adult how frequent misdiagnoses are. I understand it's good for a doctor to sound confident, but "confidently wrong" is imo much worse than "cautiously wrong". We really need better imaging/diagnostic tools that cut down on human bias; hoping for a star trek tricorder someday.
Yeah, I've had to fight to get medication that the doc insisted "doesn't work" - had to cite actual studies that showed blatant results showing effectiveness. The way society has this widespread "appeal to authority" built in around doctors drives me crazy, because they are treated as if they are the ultimate authority on health/medical, but are often woefully under-educated about specific subtle details that can end up being critical to the management/prognosis of a health issue.
I have a worsened lifelong issue because of repeated sub-optimal "solutions" to a problem, such that the best long-term solution was found by the THIRD doctor that looked at my problem. "Solutions" from the first two guaranteed my problem will forever be worse than it would have been (solely due to their treatments), if only the third doc's solution had been considered/presented first. Even worse, I was a teenager and young adult when dealing with the first two. My mistake for not doing my own comprehensive research, apparently -- the thing we entrust doctors to do for us...
> It's been super eye-opening to me as an adult how frequent misdiagnoses are.
I was talking to a specialist in a field where a rare condition has started to trend on TikTok. It was also eye-opening to learn how much they're struggling under the weight of bad referrals for patients who don't have the condition they claim.
That's not to say they aren't sick. The patients are suffering from something. However between hours of TikTok and ChatGPT they can convince themselves they have a condition and learn how to convince their primary care doctor to put in the referral
This doesn't work as much for conditions that have objective criteria like blood tests, where it's easy to filter out the patients who have both negative blood tests and a PCP who hasn't tried to investigate other explanations.
An example of a popular self-diagnosis is MCAS: Mast Cell Activation Syndrome. MCAS specialists are overwhelmed by self-diagnosed patients trying to get appointments who have never even have a tryptase blood test. If you go on to any subreddit or forum for chronic health conditions you will find a large number of people there have been convinced they have MCAS, and new members are told they might have MCAS too.
This is creating a separate fatigue among providers who need to keep their guard up at all times so they can maintain focus on the patients who really have these conditions instead of letting their schedules get destroyed by patients who don't. It's a hard problem.
Not to be a capitalist about it, but given the US health care system, and the fact that there's a diagnostic test for it, that sounds like a business opportunity. Setup an intake website where the customer, err, patient, fills out their information, submits their insurance, and answers a questionnaire, and then the teledoc web portal system gives them lab work to do. Charge the patients for the privilege, and also charge the doctors to use this screening process.
The part that doctors see that individuals don't is the flood of people who are chronically freaking out over nothing.
There are going to be casualties of doctor's triage, and those stories will be beyond upsetting, but most would agree its better than an 8 month wait to get an MRI.
I've heard so many stories, and have had so much recent close experience of those stories not ending on a high note. It's nice to hear that Burnt Sushi's and your wife's experience do sometimes end in a very positive way.
Ooof, really sorry to hear that. I'm glad she ultimately got the treatment she needed.
In my case, the misdiagnosis up front was entirely reasonable. The generalized anxiety disorder diagnosis from my PCP made a lot of sense given what was happening. I hadn't had delusions yet at that point. It was... a mixture of panic attacks, night sweats, jaw pain and a greatly increased level of anxiety compared to my baseline.
My PCP did run a bevy of tests (chest x-ray, and took tons of blood) to try and rule out anything biological.
Given what was known at the time, I think my PCP did the right thing. And when my symptoms really escalated (delusions, suicidal ideation, falling and hitting my head), my PCP suggested going to an ER. And that's what we did.
I think it was the ER that really dropped the ball. Given the sudden onset of everything, the fact that they didn't get me in front of a neurologist is, in retrospect, really quite baffling. That's when I went to a psychiatric hospital, where I spent 3 nights.
I only got out of that hospital due to total luck. My neighbor was old college buddies with a neurosurgeon. (We had no idea about it. It just came up randomly when my neighbor was dropping my son off at home for us.) That was the critical connection because he ended up talking to the neurology department at Brigham and Women's, then talked to the psychiatric hospital and was the one who facilitated my transfer.
My wife tried to do it on her own but they wouldn't allow it because I had been medically cleared. She had to give 3 days notice to pull me out. Or otherwise, by default, I would see a neurologist after 2 weeks. According to the psychiatric facility.
I really don't know if I would have made it that long. The encephalitis wouldn't have killed me in that span of time, but I was in an extremely dark place.
I'm also really lucky that this is an autoimmune disorder that has a pretty objective diagnostic criteria: a positive antibody test in your cerebral spinal fluid. You "just: need to have your spine tapped to get that though. Fun times.
Absolutely not a defense of what happened but that GAD diagnosis sets in motion the anchoring, because now you have an “established” (and recent) psychiatric diagnosis and it’s all too common that an ED is going to heavily prioritize this as a progression. EDs are just very bad in general about reconsidering a differential for a (new) chronic condition unless it’s flashing like a neon sign, especially when there is an easy enough dispo to reach for, transfer to psych in this case. From the history provided the history of a fall is the only thing mentioned that sounded like a slam dunk brewing neurological deficit, and it is not very specific, half the ED are people that fell. I’m sure you’ve read the MDM portion of the ED note .
Very unfortunate.
>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.
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)
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...
> 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
"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.
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.
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.
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.
>it's expected that around 7,000 HN readers age 25-44, die each year
That's not true unless HN readers are a representative sample of the overall 25-44 population, which they aren't. Higher-income/SES is associated with a lower mortality rate than the overall population average.
These sort of factors all have a relatively small impact. For instance, to take it to the ridiculous extreme, billionaires live about 10 years longer than average. That sounds like a lot, but it's "only" about 10-15%. So instead of the conclusion being ~7000 dying each year, it might "only" be 6000 or whatever. It's largely inconsequential to the point. And as another point mentioned we're going to skew male which brings our life expectancy significantly lower, and probably goes a long way towards balancing out whatever socioeconomic advantage that may exist.
Whatever the exact number may be 7000 is going to be a pretty reasonable ballpark, and it's certainly orders of magnitude higher than most people would expect.
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
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.)
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.
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 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.
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.
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
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.
> [...] 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.
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.
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.
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.
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.
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.
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.
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.
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?
OP mentioned being told he was just worrying by a psychiatrist. They're used to seeing all sorts of psychosomatic issues caused by stress and anxiety. The old 'think horses not zebras' puts blinders on, especially when there's also claims that the US health system over-tests for things.
It is such a standard panel its not funny. That said, a psychologist is not an MD and cannot order labs, typically.
I honestly hate the US medical system for this. Basically you get scolded for not being proactive and ignoring symptoms, but if you are proactive and even slightly worried about something they treat you like a hypochondriac.
It's been super eye-opening to me as an adult how frequent misdiagnoses are. I understand it's good for a doctor to sound confident, but "confidently wrong" is imo much worse than "cautiously wrong". We really need better imaging/diagnostic tools that cut down on human bias; hoping for a star trek tricorder someday.
Yeah, I've had to fight to get medication that the doc insisted "doesn't work" - had to cite actual studies that showed blatant results showing effectiveness. The way society has this widespread "appeal to authority" built in around doctors drives me crazy, because they are treated as if they are the ultimate authority on health/medical, but are often woefully under-educated about specific subtle details that can end up being critical to the management/prognosis of a health issue.
I have a worsened lifelong issue because of repeated sub-optimal "solutions" to a problem, such that the best long-term solution was found by the THIRD doctor that looked at my problem. "Solutions" from the first two guaranteed my problem will forever be worse than it would have been (solely due to their treatments), if only the third doc's solution had been considered/presented first. Even worse, I was a teenager and young adult when dealing with the first two. My mistake for not doing my own comprehensive research, apparently -- the thing we entrust doctors to do for us...
> It's been super eye-opening to me as an adult how frequent misdiagnoses are.
I was talking to a specialist in a field where a rare condition has started to trend on TikTok. It was also eye-opening to learn how much they're struggling under the weight of bad referrals for patients who don't have the condition they claim.
That's not to say they aren't sick. The patients are suffering from something. However between hours of TikTok and ChatGPT they can convince themselves they have a condition and learn how to convince their primary care doctor to put in the referral
This doesn't work as much for conditions that have objective criteria like blood tests, where it's easy to filter out the patients who have both negative blood tests and a PCP who hasn't tried to investigate other explanations.
An example of a popular self-diagnosis is MCAS: Mast Cell Activation Syndrome. MCAS specialists are overwhelmed by self-diagnosed patients trying to get appointments who have never even have a tryptase blood test. If you go on to any subreddit or forum for chronic health conditions you will find a large number of people there have been convinced they have MCAS, and new members are told they might have MCAS too.
This is creating a separate fatigue among providers who need to keep their guard up at all times so they can maintain focus on the patients who really have these conditions instead of letting their schedules get destroyed by patients who don't. It's a hard problem.
Not to be a capitalist about it, but given the US health care system, and the fact that there's a diagnostic test for it, that sounds like a business opportunity. Setup an intake website where the customer, err, patient, fills out their information, submits their insurance, and answers a questionnaire, and then the teledoc web portal system gives them lab work to do. Charge the patients for the privilege, and also charge the doctors to use this screening process.
The part that doctors see that individuals don't is the flood of people who are chronically freaking out over nothing.
There are going to be casualties of doctor's triage, and those stories will be beyond upsetting, but most would agree its better than an 8 month wait to get an MRI.
I've heard so many stories, and have had so much recent close experience of those stories not ending on a high note. It's nice to hear that Burnt Sushi's and your wife's experience do sometimes end in a very positive way.
Ooof, really sorry to hear that. I'm glad she ultimately got the treatment she needed.
In my case, the misdiagnosis up front was entirely reasonable. The generalized anxiety disorder diagnosis from my PCP made a lot of sense given what was happening. I hadn't had delusions yet at that point. It was... a mixture of panic attacks, night sweats, jaw pain and a greatly increased level of anxiety compared to my baseline.
My PCP did run a bevy of tests (chest x-ray, and took tons of blood) to try and rule out anything biological.
Given what was known at the time, I think my PCP did the right thing. And when my symptoms really escalated (delusions, suicidal ideation, falling and hitting my head), my PCP suggested going to an ER. And that's what we did.
I think it was the ER that really dropped the ball. Given the sudden onset of everything, the fact that they didn't get me in front of a neurologist is, in retrospect, really quite baffling. That's when I went to a psychiatric hospital, where I spent 3 nights.
I only got out of that hospital due to total luck. My neighbor was old college buddies with a neurosurgeon. (We had no idea about it. It just came up randomly when my neighbor was dropping my son off at home for us.) That was the critical connection because he ended up talking to the neurology department at Brigham and Women's, then talked to the psychiatric hospital and was the one who facilitated my transfer.
My wife tried to do it on her own but they wouldn't allow it because I had been medically cleared. She had to give 3 days notice to pull me out. Or otherwise, by default, I would see a neurologist after 2 weeks. According to the psychiatric facility.
I really don't know if I would have made it that long. The encephalitis wouldn't have killed me in that span of time, but I was in an extremely dark place.
I'm also really lucky that this is an autoimmune disorder that has a pretty objective diagnostic criteria: a positive antibody test in your cerebral spinal fluid. You "just: need to have your spine tapped to get that though. Fun times.
Absolutely not a defense of what happened but that GAD diagnosis sets in motion the anchoring, because now you have an “established” (and recent) psychiatric diagnosis and it’s all too common that an ED is going to heavily prioritize this as a progression. EDs are just very bad in general about reconsidering a differential for a (new) chronic condition unless it’s flashing like a neon sign, especially when there is an easy enough dispo to reach for, transfer to psych in this case. From the history provided the history of a fall is the only thing mentioned that sounded like a slam dunk brewing neurological deficit, and it is not very specific, half the ED are people that fell. I’m sure you’ve read the MDM portion of the ED note . Very unfortunate.
>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.
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/
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...
> 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
"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.
Man's best friend is the best friend to experiment on (instead of humans). Working mRNA cancer vaccine.
https://people.com/tech-pro-uses-chatgpt-to-create-cancer-va...
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.
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...
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.
>it's expected that around 7,000 HN readers age 25-44, die each year
That's not true unless HN readers are a representative sample of the overall 25-44 population, which they aren't. Higher-income/SES is associated with a lower mortality rate than the overall population average.
These sort of factors all have a relatively small impact. For instance, to take it to the ridiculous extreme, billionaires live about 10 years longer than average. That sounds like a lot, but it's "only" about 10-15%. So instead of the conclusion being ~7000 dying each year, it might "only" be 6000 or whatever. It's largely inconsequential to the point. And as another point mentioned we're going to skew male which brings our life expectancy significantly lower, and probably goes a long way towards balancing out whatever socioeconomic advantage that may exist.
Whatever the exact number may be 7000 is going to be a pretty reasonable ballpark, and it's certainly orders of magnitude higher than most people would expect.
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
I wish you a fast and full recovery.
Best of luck mate. Most of us take our health for granted.
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!
> 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.
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/
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.
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 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.
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
> 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?
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.
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
I'm very lucky to have had that connection. I didn't even know I had it until it was there. So I'm lucky on another level there too.
I was put on a low dose of an anti-psychotic. I am in fact still on it. We just haven't gotten to tapering off of it yet. (Other medications have taken higher priority.) Tapering off all of my medications, which is the goal, will take quite some time.
In the moment, I very much welcomed the anti-psychotic. I would do anything to fix what was wrong with me. The problem is that the front-line treatment for anti-NMDA receptor encephalitis (IVIG and steroids) takes a minute to kick in. Moreover, you don't have the diagnosis until later. There was a point in time, before the positive CSF antibody test but after the abnormal MRIs, where multiple sclerosis was a possible diagnosis.
In any case, once I got out of the psychiatric hospital and into Brigham and Women's, an MRI is indeed what I had right away. And that's when the brain lesion was found. But! Not all cases of anti-NMDA receptor encephalitis have an abnormal MRI. Susannah Cahalan, for example, had two normal MRIs. Brain inflammation was only detected indirectly at first because of the "clock test"[1]. And they later did a biopsy on her brain to confirm.
In retrospect, yes. I think I could have done a better job of advocating for myself on my first ER visit and demanded to see a neurologist. But I didn't know what I didn't know, unfortunately.
[1]: https://www.encephalitis.info/news/brain-on-fire-susannahs-r...
> [...] 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.
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.
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'm sorry to hear it, and glad you seem to be on the mend with a positive prognosis.
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!
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
I'm glad you got diagnosed and the treatment is working. Sending you virtual hugs!
ty for this writeup Andrew, all the best to you
Wishing you a full and fast recovery!
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.
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://images2.imgbox.com/0b/d7/AKg9AJg6_o.png