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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

#191
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…

I'm a man, and when I was a teenage boy I was tired. All the time. My feet had also shrunk and I lost some height. This all started after a bad concussion, though I'm not sure if he made the connection on that last point.

My doctor's diagnosis? Depression. Oh, and my foot arch must be getting higher.

My sister's best friend going up lost her dad because he was told that the pain from recent dental work couldn't be that bad and that he should just tough it out. The infection broke through into his brain and he died very quickly.

My dad almost died from lupus because doctors wouldn't test him for it because it primarily affects women.

Women, statistically, are more neurotic. I'm sure that affects how doctors diagnose them, and it shouldn't. However, I don't like things like what you're describing to be attributed to misogyny. It could be, but it also could just be that doctors focus way too much on horses when it could actually be a zebra. Hopefully LLMs will help with that - when GPT 3 or so came out way back when, one of the first things I did to test it was to give it what I knew about my condition at the time. It told me 3 tests I should have done, one of which was correct, and one of which I still haven't managed to get a doctor to give me after trying for many years.

If you blame it on misogyny the actual problem won't get fixed.

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

#192

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)

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…

I recently discovered openevidence.com, and it's apparently what many doctors have started using for diagnosing patients (with or without their consent). It could be worth looking into for trying to find an explanation of symptoms that might not have a clear diagnosis. It may also just be the new WebMD once it gains more popularity (or even already), but may be another tool in your arsenal all the same.

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

#193

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…

I'm a man, and when I was a teenage boy I was tired. All the time. My feet had also shrunk and I lost some height. This all started after a bad concussion, though I'm not sure if he made the connection on that last point. My doctor's diagnosis? Depression. Oh, and my foot arch must be getting higher. My sister's best friend going up lost her dad because he was told that the pain from recent dental work couldn't be th…

I'm not blaming it on misogyny. I thought I was very clear that "medical misogyny" is a commonly used term, and was very specific on the definition.

Also, in this sibling comment thread[1] to yours I discussed with haldujai why we both dislike the term, specifically because of the animus is implies, which is inaccurate.

It is however, a term you will hear in discussions like this, so it is good to know what it means, and the fact that the problem as defined exists, no matter what you call it.

[1] https://news.ycombinator.com/item?id=48392371

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

#194

Earlier quoted context omitted.

A decade of dealing with CFS sounds like absolute hell. I saw a close friend decline from a 90%-ile athlete to having trouble getting out of bed within a span of 2 months, and it was heartbreaking. This is someone I looked up to in the gym, went climbing with, went on hikes with. Living in Spain, he did have a hard time getting a proper diagnosis, with doctors eventually settling on ME/CFS. It's been 2 years now and…

Thanks man, yea I also have mononucleosis antibodies which I think caused it (EBV IgG and IgM) which I think was the trigger for me (Glandular fever). Seems like that virus in particular lingers and reactivates in many people. My current line of research is into treatment for that, I've tried all the usual antivirals but they don't do much, but there's several new actual vaccines being developed which I'm trying to g…

Just sent him this thread!

> Seems like that virus in particular lingers and reactivates in many people.

Scary cuz it spreads from kissing / sharing fluid containers :O

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

#196

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

Anecdotally: an endocrinologist diagnosed me a macroprolactinoma just by seeing me entering for a consult about another problem.

"You're here for a prolactinoma?" "Nope" "I'd like to get this blood work done tho"

One week later the blood work confirmed her hunch.

Experience can get some crazy results.

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

#197
Glad to hear that you found your way out of the psych ward to get properly diagnosed and treated. I've witnessed first hand people getting trapped in the psych system with neurological or endocrinological conditions. It can be almost impossible to get out, especially if the "diagnosis" is a psychotic disorder. Once you have such a diagnosis pinned on you, anything you say can be dismissed as a delusion, and most psychiatrists are woefully bad at considering somatic explanations for symptoms. You definitely got very lucky.

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

#198
post #104

Earlier quoted context omitted.

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)

I will point our that most relationships end in separation. Maybe the reason for the breakup was in their story. Maybe they just stopped liking each other. We can't know without OP telling us.

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

#199

Earlier quoted context omitted.

I just learned I have this as well (not as severe). Quercitin helped me. I am taking I think 1600mg (with bromelain) per day. How much was she taking, and what is the mast cell stabilizer that helped, if you don't mind my asking? I've been dealing with my symptoms for 17 years this year and Quercitin + Zyrtec + Pepcid is the first thing that's made a dent in it. I started a few weeks ago and it's been amazing but I'm…

Not op but my wife has MCAS. The things that have helped the most are: Oral Cromolyn (helped sooo much with gi issues), and more recently she's started Ketotifen which is a systemic mast cell stabilizer that's seemed promising but is fairly new. She also tried Montelukast which was well tolerated but didn't make a ton of difference for her personally (but I know it helps a lot of people). Supplement wise DAO was the…

Check out Ketotifen

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

#200

>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 psychol…

What BurntSushi said regarding these things being very nonspecific is absolutely true here.

E.g. Multiple Sclerosis can very well fit what you're describing, too. Commonly, there's a flare-up (we commonly use the term "attack" funilly enough)of some neurological symptoms (numb limbs, tingliness, diziness, vision issues are very common) that can last a few days/weeks and then mostly or completely subsides (until the next time).

Absolutely not suggesting that's what it was, just that it is what it could be too (or many other things — auto-immune diseases in particular can be really broad and nasty).

Sushi, I'm so glad you're doing better. Some of what you said (including just writing about it for awareness and sharing) resonates with my MS experience. I'm sorry you've experienced this and I hope things will keep looking up! <3

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