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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

#61

Post by code_duck »

OkayPhysicist wrote: post #37
code_duck wrote: post #18

Earlier quoted context omitted.

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…

How did it take a year to diagnose diabetes? Are there symptoms of Type 1 that aren't downstream of blood sugar? I, some chucklefuck with some first aid experience, can figure out if someone is hypo/hyperglycemic by smell.

LADA comes on slowly compared to regular juvenile onset type 1. With regular T1, you'll be in diabetic ketoacidosis and hospitalized within 3 months. LADA can take a year or two, sometimes even longer. I had Celiac diagnosed a year prior, and many of the symptoms seemed the same - fatigue after meals, heartburn, other digestive issues - and that confused things. Plus I had terrible medical care for the first 6 months while I was losing weight and wondering what was happening.

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

#62

Post by AgentMasterRace »

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 researching myself and how things work and how supplements affect your body and such for sometimes 12 hours a day. (Chronically unemployed, chronically ill.)

We got her a DNA test and I went to work researching everything and comparing the possibilities to her symptoms, we tried countless different supplements that could help... And eventually one did, it wasn't a cure but it was a relief she had never felt before. That was Quercetin, which is a mast cell stabilizer. It took about 2 years of research and trial and error to find some relief. We took our findings to the doctor and finally got a referral to an internal medicinist who promptly after hearing the symptoms and what has helped diagnosed her and she was out on a proper mast cell stabilizer. She went from being in bed 20 hours a day to being able to fully enjoy life. (Sadly, without me though!)

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

#63

Post by code_duck »

Scoundreller wrote: post #45
forlorn_mammoth wrote: post #39

Earlier quoted context omitted.

Adult onset. It can come on slowly (as in over the course of a year). And many downstream symptoms include mood changes. Hard to know it is blood sugar related if you don't test blood sugar levels. Really glad you can smell it on people, smell is a powerful diagnostic tool that few people are trained on.

That’s the bit I don’t get: isn’t glucose testing by the health care system fairly common with any sort of “I don’t know what’s going on, let’s order some labs and see what comes back” screening/testing panel?

I was told I had 'prediabetes' and actually got my own glucose testing kit. It didn't seem far off at that time, though, possibly because I was having such a difficult time eating anything. I didn't really know what to look for, though. Glucose being above 100 when I woke up? Over 180 a couple hours after eating? I tested a lot but didn't have any doctor support or interpretation.

At the hospital, I saw a gastroenterologist who specialized in Celiac, because I had just been diagnosed with Celiac a year earlier and many of my symptoms seemed related to digestion. He absolutely should have done diabetes tests. On the last day of the 2 weeks I was there, he said "It could be type 1 diabetes... some people get that too" but didn't order any tests. When I was diagnosed at the ER another year later, my glucose was 650 (very high) and had been averaging 300 (it should be ~85). So yeah, the doctors were negligent, in my assessment.

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

#64

Post by code_duck »

zdragnar wrote: post #49
Scoundreller wrote: post #45

Earlier quoted context omitted.

That’s the bit I don’t get: isn’t glucose testing by the health care system fairly common with any sort of “I don’t know what’s going on, let’s order some labs and see what comes back” screening/testing panel?

OP mentioned being told he was just worrying by a psychiatrist. They're used to seeing all sorts of psychosomatic issues caused by stress and anxiety. The old 'think horses not zebras' puts blinders on, especially when there's also claims that the US health system over-tests for things.

I told my gastro that I was on a very restricted diet. I had lost a ton of weight from not being able to swallow food and though it was related to Celiac or food allergies, and they really didn't listen to what I was saying. The psychologist told me that I was "so worried about gluten that I was starving myself", which was quite offensive, actually. I had been in phsyical pain every day for months and went from 180 lbs to 120 (at 5'10") until I found a liquid diet that worked for me and regained weight. I had no idea carbohydrates were an issue.

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

#65

Post by everyone »

jr3592 wrote: post #19
bonsai_spool wrote: post #16

One thing that may be intriguing is that this is a relatively new diagnosis (first described in 2007). There's so much medicine to discover and we need to keep supporting a biomedical research enterprise that can find reversible treatments to disorders that would otherwise be difficult to treat (his symptoms, for example, would be thought of as a schizophrenia manifestation in another era) https://pmc.ncbi.nlm.nih.go…

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…

What's happened in software / computing in the last 20 years that's good? Imo it could be argued that overall the user experience has gotten worse. Dead internet theory, enshittification.

* The web is pretty much dead. Time Berners Lee's ideals certainly are.

* Computing is dominated by completely evil megacorps.

* They are making a concerted effort to make people as tech-illiterate as possible and also make universal computing illegal.

* Theres been years where GPU's were being price gouged, 1st by crypto bros, then NFT bros, now LLM bros.

* Cant even buy RAM now.

* They put e-fuses into hardware now, comes right out of the factory as ready made e-waste that cant be repurposed.

* The biggest platforms, Android and iOS, are walled garden, locked down, corporate nightmare worlds. And there is practically no alternative.

* Social media is making people depressed and also very easy to manipulate en-masse by anyone willing to pay.

* Moore's law stopped and software bloat overtook performance gains.

* VR might have been cool but it was pre-enshittified in its nascent stages. Freakin' facebook bought Oculus before they had released a single headset.

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

#66

Post by tuvix »

somenameforme wrote: post #12
jakobnissen wrote: post #4

This sounds horrifying. It’s one of those stories that makes me think in just how many ways our bodies or minds can break or malfunction in terrifying ways. Any one of us could, right now, carry a lethal tumor that hasn’t been discovered. Best of luck to you, and get well. I’m glad it didn’t get even worse before it was treated.

CDC mortality tables [1] are kind of eye opening for those who don't realize how brief life is. Average age range on HN is probably in the 25-44 year old bracket. That bracket has an approximate mortality rate of 140/100k per year. HN has what, 5 million or so monthly users? So that means of all of 'us', it's expected that around 7,000 HN readers age 25-44, die each year. That's fairly close to 1 death per hour. [1]…

Wow I need to stop browsing HN

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

#67

Post by Aurornis »

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…

> and also charge the doctors to use this screening process.

Why would a doctor pay another service to order labs for them?

Sadly there are a lot of clinics popping up to serve the internet self-diagnosers, but not in the way you're talking about. They're built around a single enterprising doctor who either believes the disease is undetectable by normal tests, or who is aware that they're stringing patients along but likes the money. If someone opens a specialty clinic for an internet-popular disorder, they have a perpetual line of patients who will gladly pay for a doctor to tell them what they want to hear.

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

#68

Post by Sharlin »

klipt wrote: post #17
somenameforme wrote: post #12

Earlier quoted context omitted.

CDC mortality tables [1] are kind of eye opening for those who don't realize how brief life is. Average age range on HN is probably in the 25-44 year old bracket. That bracket has an approximate mortality rate of 140/100k per year. HN has what, 5 million or so monthly users? So that means of all of 'us', it's expected that around 7,000 HN readers age 25-44, die each year. That's fairly close to 1 death per hour. [1]…

Your CDC figure is an average over all genders. Assuming hacker news readers are disproportionately men, the mortality rate is even higher, since men die younger than women on average.

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.

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

#70

Post by rustyhancock »

burntsushi wrote: post #3
sscaryterry wrote: post #2

Best of luck mate. Most of us take our health for granted.

Thank you. It's been a trip. The worst thing that has happened, but also the best. It has definitely given me a new perspective on life, that's for sure. My favorite side effect is that I now love all foods. Prior to this, I was a rather picky eater. Now I love everything!

That maybe the steroids I'd imagine!
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