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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

#231

Post by hluska »

anotherevan wrote: post #193
Auracle wrote: post #191

Earlier quoted context omitted.

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,…

I totally missed that. Your original post was more of a rant but it sure sounded like you were blaming misogyny. It was a poor comment.

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

#232

Post by palinnilap »

SuperNinKenDo wrote: post #134
ipaddr wrote: post #104

Earlier quoted context omitted.

Why did you breakup after everything?

I'm pretty sure someone will accuse me of reading my own trauma into this, but AgentMasterRace mentions also being chronically ill. No mention of timing between Ex significantly imroving and deciding that they had "better options", but the sad reality of life is that many people you love, including friends, will never care for you the way you might care for them, and once they have "better options" will cast you asid…

Wise tender, and traumatically true words.

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

#233

Post by tru3_power »

arkh wrote: post #196
forrestpitz wrote: post #123

Earlier quoted context omitted.

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.

Did they state what made them have that hunch?

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

#234

Post by clark_dent »

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

Biomedical research in the US has taken an absolute nose-dive several times over the past decade or two. This was my field for the past 20 years, so I'm fairly familiar.

It requires enormous capital investment and a very, very long time to turn out meaningful results, so it's only available to those with corporate-depth pockets or government subsidies. It also requires a broad and deep skill set.

With the FDA, USDA, NIH, CDC and DoEd all being gutted, the subsidies are gone. Academia can no longer support a huge swath of biomedical research.

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

#235

Post by bossyTeacher »

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…

> Sadly, without me though!

Sad to hear that. You sound like a keeper. Anyway, are you free this weekend? ;)

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

#236

Post by pgt »

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…

Ooh, thanks for this. I'm going to try quercetin for my histadine sensitivity in red wine, which causes a skin reaction. I thought it was the sulphites, but after trying older wines (which have fewer sulphites), it made it worse. So I've narrowed it down to histadines. The dilemma here is that wines tend to improve with age, but they contain more histadines.

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

#238

Post by pygy_ »

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…

Psychiatrists are tourist guides for the Paris catacombs who try to get around using an underground map.

When you do cluster analysis of the symptoms of psychiatric patients, the empirical clusters don't match the DSM entries.

Schizophrenia is at least 8 distinct diseases (see GWAS), so orphaned that they don't have a name.

Psychiatry is an epistemic mess, and medicine uses it as a garbage bin for the patients it doesn't understand (because blissful ignorance is the norm over there).

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

#239

Post by burntsushi »

trevor-e wrote: post #222

What an ordeal, this stuff really scares me, like the post about the Gitlab founder having to diagnose and treat himself. Great to hear you are recovering. If you find yourself in Cambridge I will gladly buy you a beer for how much rg has helped me.

<3

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

#240

Post by burntsushi »

rendaw wrote: post #181
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 don't mean direct this specifically at you, but aren't there databases that can look up diseases by symptoms? Are doctors not trained to consult those, maybe after ruling out common causes? Why is forgetting relevant in this context? I'm asking because I've had frequent encounters with doctors whose process seems to be, literally, "remember if there's anything like the described symptoms that I learned in medical s…

After my abnormal brain MRIs, my understanding is that the diagnosis came down to either some kind of encephalitis or multiple sclerosis. But test results have to come back first. I was even set up with a follow-up with an MS specialist. Once my anti-NMDA receptor encephalitis test came back positive though, that follow-up got cancelled and replaced with a neuro-immunologist that specializes in these sorts of things.

And even if I did have an MS, there are various sub-types that require going through something quite complicated call the McDonald criteria: https://en.wikipedia.org/wiki/Diagnosis_of_multiple_sclerosi...

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