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I was recently diagnosed with anti-NMDA receptor encephalitis

burntsushi.net

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Re: I was recently diagnosed with anti-NMDA receptor encephalitis

#31

Post by 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.

Re: I was recently diagnosed with anti-NMDA receptor encephalitis

#33

Post by bonsai_spool »

jr3592 wrote: post #19
bonsai_spool wrote: post #16

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.go…

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…

> 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

Re: I was recently diagnosed with anti-NMDA receptor encephalitis

#34

Post by [deleted] »

sheepolog wrote: post #20
cgh wrote: post #15

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.

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.

[deleted]

Re: I was recently diagnosed with anti-NMDA receptor encephalitis

#35

Post by burntsushi »

cgh wrote: post #15

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.

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. (EDIT: Well, maybe not. See below.) 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.

Re: I was recently diagnosed with anti-NMDA receptor encephalitis

#36

Post by dbt00 »

burntsushi wrote: post #3
sscaryterry wrote: post #2

Best of luck mate. Most of us take our health for granted.

Thank you. 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!

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.

Re: I was recently diagnosed with anti-NMDA receptor encephalitis

#37

Post by OkayPhysicist »

code_duck wrote: post #18
cgh wrote: post #15

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 t…

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.

Re: I was recently diagnosed with anti-NMDA receptor encephalitis

#38

Post by Aurornis »

sheepolog wrote: post #20
cgh wrote: post #15

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.

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.

> 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.

Re: I was recently diagnosed with anti-NMDA receptor encephalitis

#39

Post by forlorn_mammoth »

OkayPhysicist wrote: post #37
code_duck wrote: post #18

Earlier quoted context omitted.

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 t…

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.

Re: I was recently diagnosed with anti-NMDA receptor encephalitis

#40

Post by somenameforme »

logicchains wrote: post #27
somenameforme wrote: post #12

Earlier quoted context omitted.

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]…

>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.

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