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I was recently diagnosed with anti-NMDA receptor encephalitis

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

#201

Post by Cthulhu_ »

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

EDS and co are notorious for that; the symbol for various EDS organizations is a zebra, because doctors get patients with joint problems and think "arthritis, but they're a bit young, weird, oh well off to the rheumatologist" and before you know it you've seen various professionals and no diagnosis.

There's also HSD, which has a lot of overlap and may yet be a subtype of EDS, but the genetic marker hasn't been found yet. And when you get a patient with the full associated combo of symptoms [0], each of which only reveal themselves or become problematic over a long span of time (e.g. eye problems at young age, period problems / endometriosis as teenager/adult, neurodiverse conditions only diagnosed in 30's, severe joint problems and fatigue in late 30's, etc), few people will actually link them together as possibly having the same single cause.

But thanks to the internet, people with symptom X will find other people with symptom X and before you know it you have a group of people that are like "Hey, we all have symptom X, Y, Z, A, B and C, what gives?".

[0] https://en.wikipedia.org/wiki/Hypermobility_spectrum_disorde...

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

#202

Post by Sharlin »

klipt wrote: post #154
Sharlin wrote: post #68

Earlier quoted context omitted.

On the other hand, my guess is that male HN readers are not a very representative sample in this respect. That is, they (we) are significantly less likely than average to engage in the type of risky behaviors that mostly explain the gender disparity.

The difference is mostly heart disease not "risky behavior". If anything the average software engineer is more likely to die of heart disease due to our sedentary lifestyles. Sitting on chairs is the real "risky behavior" in terms of health, although few people think of it that way.

I wasn’t aware of the degree of disparity in early-onset ischemic heart disease, thanks. But it doesn’t seem to me it’s "mostly heart disease rather than risky behavior", more like those are both major causes of excess mortality among young men.

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

#203

Post by cubefox »

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.

> I’m not entirely sure why I’m mentioning this, other than I sympathize deeply with your wife.

Reminder that he is the one who is ill, not his wife.

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

#205

Post by kvgr »

code_duck wrote: post #18
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.

I had a much more common autoimmune disease, adult-onset Type 1 Diabetes (LADA), determined to be health anxiety by a very large, major renowned hospital who should have known better. It led to over a year of continued illness before finally I was diagnosed at an ER. I'm sure some people have psychosomatic or anxiety based illnesses, but it's rather grating to be told by a psychologist that you're worrying yourself t…

Once you have psych. diagnosis its over, doctors see you throught that lens. Ah yes, he has anxiety, of course his symptoms are psychosomatic and there is no need for more testing. My uncle was schizophrenic, medicated and living OK life after years and years of delusions. He also had untreated diabetes for years, but was on the right track. He went to doctor with pain in belly, they sent him home and told him nothing is wrong, couple days after he died from ruptured gallbladder...

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

#206

Post by dnnddidiej »

arjie wrote: post #100

IMHO if you have a sufficiently empirical bent of mind, you are both more equipped and more invested in a good diagnosis and analysis of your own conditions. I have a personal EMR system that I run for the family and I get as much data as I need to tackle health issues. If you do, it is important to maintain epistemic hygiene: you need to correctly consider base rates, false diagnoses, and so on. If you are able to d…

What is an EMR system. Im experimenting with a repo of medical data about me and claude.

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

#207

Post by da_chicken »

Cthulhu_ wrote: post #201
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

EDS and co are notorious for that; the symbol for various EDS organizations is a zebra, because doctors get patients with joint problems and think "arthritis, but they're a bit young, weird, oh well off to the rheumatologist" and before you know it you've seen various professionals and no diagnosis. There's also HSD, which has a lot of overlap and may yet be a subtype of EDS, but the genetic marker hasn't been found…

The last I knew, EDS and HSD are mutually exclusive. HSD is typically diagnosed because you have hypermobile joints, fatigue, brain fog, POTS, and other symptoms, but you lack the very specific genetic markers that hypermobile EDS requires.

The real problem is twofold. One is that EDS had historically been a diagnosis of exclusion, and a lot of the diagnostic tests were difficult. The second is that the disorders overwhelmingly affect women, and women tend to get ignored about chronic pain and fatigue.

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

#208

Post by knollimar »

sfink wrote: post #129
ipaddr wrote: post #104

Earlier quoted context omitted.

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 descrip…

>"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."

This is overly strong. X2 is likely similar to X and Me2 is similar to Me. X2 is certainly more likely to get along well with Me2 than a random, but far from guaranteed (which proves your point, but I wanted to rein in the pessimism)

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

#209

Post by sfink »

knollimar wrote: post #208
sfink wrote: post #129

Earlier quoted context omitted.

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 descrip…

>"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." This is overly strong. X2 is likely similar to X and Me2 is similar to Me. X2 is ce…

Yes, that's fair, and you are right. I guess I was using hyperbole to contrast with the naive and common "I'm great at basketball so obviously I'll be really good at baseball" mentality. The skills are not unrelated, but success in one area does not guarantee success in another.

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

#210

Post by BrannonKing »

The thing with all these autoimmune diseases: they have the same foundational problem. Their is something in the blood that doesn’t belong there and it resembles some part/cell of our body. Our body builds white blood cells to destroy this thing and inadvertently destroys part of the body. The important questions: what is it and how is it getting into the blood?

The most likely way it gets into the blood is through the digestive track. Some possible mechanisms: 1. Some detergent or similar chemical (e.g. PFAS is a solvent) dissolves the food (or the oil carrying the food) into water. The stomach pulls water back into the blood stream, bringing dissolved things with it. 2. There is some damage to the stomach or intestinal lining, stemming from physical injury, things getting stuck (lack of fiber), acid damage, some other chemical destroying mucus lining, etc. 3. You also have some autoimmune damage on your intestines. 4. You eat certain foods that require a symbiotic digestion with gut bacteria, but lack that bacteria or have killed it with eating preservatives or pesticides or artificial sweeteners, etc. The undigested food makes it to the larger absorption holes at the end of the intestinal run.

It’s also possible that a brain injury caused some brain cells to end up in the blood stream. Normally, though, the body has a mechanism to avoid attacking its own cells, the CD47 mechanism. Maybe that can become damaged or malnourished in some way. I’m sure that there’s a host of other things that can go wrong with that.

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