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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

#81

Post by burntsushi »

ZpJuUuNaQ5 wrote: post #57

>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…

Thank you for the kind words.

Trouble swallowing, jaw pain, dizziness, double vision (and more) were all things I experienced as well. At one point, my left eye was dropping significantly.

Not to say you had or have what I have. The symptoms are very non-specific.

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

#82

Post by burntsushi »

memco wrote: post #43
Munksgaard wrote: post #31

> [...] Since I had been cleared physically, getting out of the psychiatric hospital quickly to see a neurologist proved difficult. This was the single point, in retrospect, where our health care system let me down. It took a lucky connection with someone who happened to be a doctor to get me out of the psychiatric facility and into the neurology department at Brigham and Women’s Hospital in Boston. That sounds scary…

Won't weigh in on psychiatric care, but I will say from experience that everyone should look into both an advanced healthcare directive and an advanced psychiatric care directive: these are documents that authorize someone else to have input into your care if you are unable to do so yourself. Psychiatric care is considered separately so even though a medical health directive was in place we were stuck and could not h…

We did at least have a health care proxy and a power of attorney in hand.

Funny story (that I didn't include in the blog) is that I actually wound up in a psychiatric facility for a second time after I was in-and-out of Brigham and Women's on 3 separate occasions. I was in a much better state mentally and physically, and this particular facility (McLean Hospital) was way better than the first one I was in. The circumstances were different and I was happy to be there because things were still very rocky at home. And very dark. So my wife and I felt it better that I be in an in-patient facility at this point, which came right before my official anti-NMDA receptor encephalitis diagnosis.

Anyway, the funny story is that I showed up to McLean, after being transferred from Brigham and Women's, with a physical copy of my wife's PoA over me and a health care proxy. The charge nurse said it was the first time he had ever seen anything like that before.

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

#83

Post by tliltocatl »

Sharlin wrote: post #68
klipt wrote: post #17

Earlier quoted context omitted.

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.

A lot of gender disparity is cardiovascular disease being 50% more likely to be diagnosed in men than in women of same age, so not directly related to risky behavior.

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

#84

Post by BigTTYGothGF »

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]…

> HN has what, 5 million or so monthly users?

This seems remarkably high.

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

#85

Post by abstractbill »

It's nice to see peoples' success stories with diagnoses. I've been suffering from something for more than 20 years now. I was healthy until 2005. Then it seemed like I got sick with some kind of virus and just... never got better. I have unpredictable good stretches and bad stretches. During my bad stretches I can't get out of bed. I've mostly given up on the idea of a diagnosis myself, after seeing dozens of doctors over the years, with the most positive interactions being Stanford researchers telling me I'm a really "interesting" case.

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

#87

Post by ChrisMarshallNY »

abstractbill wrote: post #85

It's nice to see peoples' success stories with diagnoses. I've been suffering from something for more than 20 years now. I was healthy until 2005. Then it seemed like I got sick with some kind of virus and just... never got better. I have unpredictable good stretches and bad stretches. During my bad stretches I can't get out of bed. I've mostly given up on the idea of a diagnosis myself, after seeing dozens of doctor…

I've seen that happen with Lyme Disease, and with Mono. Autoimmune disorders are notoriously difficult to diagnose.

In the 1980s, AIDS was like that. All these healthy, young people, just started getting these diverse horrorshow problems, then died.

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

#89

Post by burntsushi »

anon291 wrote: post #44

A bit off-topic, but I feel like humanized monoclonal antibody treatments are so under-appreciated today despite showing efficacy against a broad class of diseases, infectious, auto-immune, and even some cancers. Absolutely amazing class of drugs IMO.

Yes! As I understand it, each dose I received (I got 3 of them) came from ~1,000 different donors. It was more expensive than my room and board at the hospital, and my room and board was not cheap.

Thank goodness for health insurance. (Which is very shallow gratitude since the system is broken in many ways. But this ended up not being a financial burden for us, which I am very thankful for.)

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