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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

#161

Post by trebligdivad »

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.

You do have to worry/wonder how many people are in psych hospitals, jail, or 6ft under when something like this might be the reason.

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

#163

Post by defrost »

anotherevan wrote: post #136
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.

> 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 amou…

It goes wider than gender bias, also from Australia:

People with intellectual disability continue to receive substandard healthcare as program to train doctors risks closure

~ https://www.abc.net.au/news/2026-06-03/intellectual-disabili...

in which an above average fitness footballer with Downs Syndrome has a lung infection ignored by doctors.

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

#164

Post by Obscurity4340 »

forrestpitz wrote: post #123
netsharc wrote: post #103

Earlier quoted context omitted.

At the risk of sounding like a cryptobro ("What about using a blockchain?"), did you ever try testing LLMs to see if they'd be able to diagnose it correctly? (I'm guessing you did the research before LLMs)

Not OP but anecdotally: ChatGPT diagnosed my wife's MCAS, POTS/Dysautonomia and Ehlers Danlos Syndrome before any doctor did (not for lack of trying on the doctor front). Once we had that direction we found the right providers and it's made a world of difference

What were her symptoms?

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

#165

Post by mcspiff »

burntsushi wrote: post #55
mcspiff wrote: post #42

Earlier quoted context omitted.

> 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.

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!

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

#166

Post by Obscurity4340 »

Aurornis wrote: post #67
fragmede wrote: post #50

Earlier quoted context omitted.

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 ch…

> and also charge the doctors to use this screening process. Why would a doctor pay another service to order labs for them? Sadly there are a lot of clinics popping up to serve the internet self-diagnosers, but not in the way you're talking about. They're built around a single enterprising doctor who either believes the disease is undetectable by normal tests, or who is aware that they're stringing patients along but…

I dunno, LifeBAC's a good example of something thats not really in line with what you mentioned but has good reason to exist given the typical relationship most people have with their drs

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

#167

Post by anotherevan »

defrost wrote: post #163
anotherevan wrote: post #136

Earlier quoted context omitted.

> 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 amou…

It goes wider than gender bias, also from Australia: People with intellectual disability continue to receive substandard healthcare as program to train doctors risks closure ~ https://www.abc.net.au/news/2026-06-03/intellectual-disabili... in which an above average fitness footballer with Downs Syndrome has a lung infection ignored by doctors.

Agreed. Disability, physical as well as intellectual. Age. Neuroatypicallity. The list goes on.

Honestly, I think when you're facing any sort of potentially serious health issue you need a wingman coming to the appointments with you. Someone who can hopefully be a little more emotionally removed. Who can ask the questions you didn't think of to make sure you've covered everything. Who you can debrief with afterwards to make sure you've taken in all the important information you were just scrambling to wrap your head around while you were in the room. And sometimes to argue on your behalf.

Done this with my kidult for most of their life, obviously. Did it with my dad's oncologist visits for prostate cancer. Had it myself with cancer and other times. You just need someone you trust in your corner when you're vulnerable.

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

#168

Post by sodafountan »

bonsai_spool wrote: post #33
jr3592 wrote: post #19

Earlier quoted context omitted.

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

I agree that being a programmer doesn't make you an expert at everything, but OP brought up a good point. Tech is a lot more accessible than other fields. It would be nice if I could pivot into other fields as easily as someone could pivot into tech.

Aside from going to college for many years, there's really no other way to break into the medical field. College is expensive and quite daunting to many (myself included), which is a shame because I'd really like to contribute more to humanity than moving pixels around on a screen and helping businesses with their data problems.

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

#169

Post by burntsushi »

williadc wrote: post #162

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.

A thousand times over. I feel really lucky to work for Charlie. :-)

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

#170

Post by wetpaws »

yesitcan wrote: post #139
ChrisMarshallNY wrote: post #87

Earlier quoted context omitted.

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.

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