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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

#121

Post by dzhiurgis »

fragmede wrote: post #50
Aurornis wrote: post #38

Earlier quoted context omitted.

> 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…

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…

> Not to be a capitalist about it, but given the US health care system

Whats that supposed to mean? Most countries have private healthcare too. Sometimes it is as popular as public i.e. Australia 45% is private vs 55% in US.

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

#122

Post by memco »

burntsushi wrote: post #82
memco wrote: post #43

Earlier quoted context omitted.

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 h…

We did at least have a health care proxy and a power of attorney in hand. Funny story (that I didn't include in the blog) is that I actually wound up in a psychiatric facility for a second time after I was in-and-out of Brigham and Women's on 3 separate occasions. I was in a much better state mentally and physically, and this particular facility (McLean Hospital) was way better than the first one I was in. The circum…

Oh dear! Medical issues are scary enough without all the red tape (has to be a better word than that) getting in the way of good care. Spreading the word in the hopes that it is more common and fewer people are left out

Thanks for sharing the story so openly! Sorry for everything you went through to get a proper diagnosis and treatment and for everything that the encephalitis itself inflicted on you. Glad you're doing better!

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

#123

Post by forrestpitz »

netsharc wrote: post #103
AgentMasterRace wrote: post #62

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)

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

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

#124

Post by Gooblebrai »

AgentMasterRace wrote: post #62

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…

Can you tell more technical details on how did you approach the research?

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

#125

Post by burntsushi »

tsoukase wrote: post #94

Very rare disease, expected to be misdiagnosed as psychiatric. I admit I would (neurologist here) But you were luckily treated by an excellent neurologic center. The lesson learned is that there are rare diseases (<1/10.000-100.000) but as they are so many, they form an important minority next to common ones (1/100-1000). Just don't forget them when data don't fit well. Such estimations is a hard dexterity of doctors…

I asked my wife about it since she has more context on the chance encounter with a neurosurgeon who was ultimately responsible for the transfer into Brigham and Women's. She said there were two things of note that led the neurosurgeon to step in (according to the neurosurgeon):

Decompensating at an increasing and alarming rate, not typical from a psych perspective. Also not in a healthy young male with no history. My wife was able to substantiate this claim with my detailed timeline. (I had some emails and wrote a lot of stuff down, as is my nature, during this time.)

My left eye was "squinty."

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

#128

Post by sheepolog »

WarmWash wrote: post #29
sheepolog wrote: post #20

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.

All the more reason to have better diagnostic tools (not to mention faster imaging)! All humans are fallible; I hope one day diagnosis is the easiest part of a doctor's job.

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

#129

Post by sfink »

ipaddr wrote: post #104
AgentMasterRace wrote: post #62

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?

Probably because life is not a fairy tale? I'll be heavily projecting here, but:

Health issues can be immensely stressful, and what is required to provide the best logistical and diagnostic support is very different from what is required to be a supportive partner and emotional caregiver. Doctors often fall into the trap of treating the disease and ignoring the patient, but at least that aligns with their job description. It is quite easy to do the same as a partner, and that is NOT the job. For certain personalities, it can often be a massive relief to disappear into searching the web and poring over medical research studies -- the key word there is "disappear". Plus, if someone is suffering physically, you can't really require them to have (what you think is) the "appropriate" amount of gratitude for what you're doing for them. (And physical suffering is always going to lead to mental suffering unless they're a 1000-year old enlightened monk.) You can be quite proud of your savior cred, and your partner can very reasonably tell you to shove that pride up your ass.

It's not about whether you're good enough or not. We all start with woefully naive views of how robust our relationships are. We get together as certain people at a certain time. Living together deepens and widens the basis for the relationship, and we'll all fool ourselves into thinking that nothing can break that apart. But fast forward a decade or two, and upend one or the other of your lives with a health challenge or some major life event, and you'll soon discover that you're in new ground and have to learn a bunch of brand new skills that you never needed before. And there's no particular reason why this person X who you bonded with years ago in environment Y is going to be easier to learn with than some random person off the street now that you're in environment not-Y with a different person X2 who evolved from person X -- just as you've evolved (or devolved) into Me2 from the Me you were. Especially not with the added challenge of a long history together of frictions and irritations that never mattered enough to tip things over the edge but do now in the new environment.

For the record, I'm still married to my X2 in my very-not-Y situation. For now. But I've seen enough that I would never look down on or even be surprised by the dissolution of even the strongest-seeming relationships when a novel challenge comes around.

Back to fairy tales -- Prince Charming's main claim to marriagability was his willingness to make out with a hot living corpse. Are you so sure your own claim is that much superior?

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

#130

Post by keithnz »

netsharc wrote: post #103
AgentMasterRace wrote: post #62

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)

one of the really good things about these kinds of write ups and accounts of experiences and false leads is that I hope it feeds the LLMs with more context. For both me and my partner we've had problems with misdiagnosis that took a while to correct. My partner also suffered with auditory psychosis, and that was a super difficult (and bizarre) time. A little while ago I just started recording everything so I can use AI tools to validate medical advice and track symptoms, already it's caught things (semi minor things) that I've been able to address with my doctor. I would never suggest relying on AI tools, but certainly useful as a second opinion type thing as well as exploring possibilities.
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