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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

#101

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 res…

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

#102

Earlier quoted context omitted.

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 h…

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

#103

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 res…

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)

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

#104

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 res…

Why did you breakup after everything?

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

#105

Earlier quoted context omitted.

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.

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.

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

#106

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 parti…

Wow, nfldb. Old school. Good times. I had so much fun with that project and the community of users.

Yeah, almost pivoted to fantasy sports! Clinical trials are more interesting :)

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

#107

Earlier quoted context omitted.

It is such a standard panel its not funny. That said, a psychologist is not an MD and cannot order labs, typically.

It's common to get a spot/random glucose test as part of a metabolic panel, but not that common to get an A1C or certainly auto-antibody tests, in my experience.

A1c has become a lot more common over the last 20 years… adoption of new standards can take a while in healthcare, even stuff that has existed for a while

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

#108
post #104

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 res…

Why did you breakup after everything?

The problem with being a "fixer" in relationships is if the other party is fixed, what they want changes, and often what they saw in the relationship isn't as relevant anymore. (to speculate from afar)

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

#110

Holy hell. Those symptoms, that clinical experience, that had to have been completely terrifying. Very glad you're on the mend, and that you got a straightforward (if weird) diagnosis. Wow.

Thank you for the kind words. :-) <3
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