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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

#11

Post by burntsushi »

philipportner wrote: post #9
burntsushi wrote: post #3

Earlier quoted context omitted.

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!

> My favorite side effect is that I now love all foods. Prior to this, I was a rather picky eater. Now I love everything! I feel like there's a burntsushi joke hiding in there somewhere. All the best Andrew.

There is actually haha. I've always hated sushi. And sushi is now on my shortlist to try again. I can't wait.

(My handle comes from graffiti I found on the booth of a hot dog stand in Worcester MA called Coney Island[1]. I thought it was a cute oxymoron and adopted it on a silly whim. I only later learned that some sushi is indeed cooked.)

[1]: https://coneyislandlunch.com/

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

#12

Post by somenameforme »

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] - https://www.cdc.gov/nchs/data/dvs/MortFinal2007_Worktable23r...

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

#15

Post by cgh »

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.

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

#16

Post by bonsai_spool »

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.gov/articles/PMC2607118/

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

#17

Post by klipt »

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]…

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.

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

#18

Post by code_duck »

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 to death when you are very, very sure that's not the issue.

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

#19

Post by jr3592 »

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, test, explore, and play around with biomedical things (cells, viruses, etc.).

Ideally it would be a purely software world where we replicate everything down to the DNA level so that you can test and play around with potential solutions...

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

#20

Post by sheepolog »

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.

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.
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