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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

#141

Post by VoidWhisperer »

> Thank you to my friends, family and doctors as well. Their support during this time was unwavering and I’m not sure what would have happened without them. “Nothing good” is what a nurse said when I posed that question to her.

I've always been told (and this has been true over the 4 or 5 times I've been hospitalized in my life) that having someone there for you, to support you and also to serve as your 'patient advocate' (so helping making sure all of the questions are asked of the doctors and stuff like that) has a definite positive effect on medical outcomes. In my cases, it was my family filling this role.

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

#143

Post by careaboutu »

burntsushi wrote: post #35
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.

Ooof, really sorry to hear that. I'm glad she ultimately got the treatment she needed. In my case, the misdiagnosis up front was entirely reasonable. (EDIT: Well, maybe not. See below.) The generalized anxiety disorder diagnosis from my PCP made a lot of sense given what was happening. I hadn't had delusions yet at that point. It was... a mixture of panic attacks, night sweats, jaw pain and a greatly increased level…

Hey sushi, we've chit chatted before but I'll stay anonymous here.

So you have had a life changing experience. I am really sorry for all the pain and fear this has caused you and your family. Iv ig is a miracle for autoimmune trainwrecks. It saved one of my loved ones lives too. I am so glad you are still here with us.

I know nothing about your recent reality. I can tell you this. Psychosis, immense fear, and near death experiences aren't something to brush off. Perhaps best not dwelled on, but I hope you either stay in therapy or begin therapy with someone who understands trauma. Not to discuss it as trauma, but to keep tabs.

You may be good to work! Good to be a kick ass dad! But if there are things you haven't dealt with here they may rear their head at a random inconvenient time down the road. Maybe you are all good, I bet you are. But please remember to take care of your mind.

Wishing you and your family the best. Stay well!

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

#144

Post by pibaker »

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…

> Yes, the biomedical world needs to go through the same boom that tech went through in the last 20 years

We are going through one right now, just not so visibly. Many forms of cancer that would have killed you quickly at the turn of the century are now controllable, if not treatable. Coming up with a safe and working vaccine for a novel virus just a year after it emerges would be unthinkable 20 years ago. HIV went from a nasty death sentence to something you take one pill a day to keep control of within my lifetime.

We just don't like to talk about it because we don't like to talk about death and life stuffs.

What is funny about this accessibility and regulation point of view is I remember around 2021 and 2022 there is a hive mind of tech people who were paranoid about all the novel virus research, "gain of function" shit and want to preemptively ban it all. The same people who decry any regulation imposed on tech. Go figure.

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

#145

Post by everyone »

natebc wrote: post #135
everyone wrote: post #65

Earlier quoted context omitted.

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 universa…

There's a lot of bleak things for sure. Linux has come a long way Valve's efforts with Proton/Linux Gaming

Yeah that is good, there are some good things, but I think on average the computer user experience is worse.. In the 80's and 90's with the rise of microcomputers and the net and the web and Linux, things were so utopian, things just seemed to keep getting cooler and computing was empowering people.

That was the cool part of "the cycle". We are defo in the shit part now. https://www.goodreads.com/book/show/8201080-the-master-switc...

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

#146

Post by komali2 »

> The problems with balance and the overwhelming nature of my psychological symptoms eventually led me to fall and hit my head. This in turn led myself and my wife to decide that I couldn’t be safe at home. And that brought us to my first emergency room visit.

It was baffling to me that it took a fall and hit on the head before the author went to the hospital, until then I saw they went to a hospital in Boston. So, American.

It's tragic how the broken American healthcare system is holding back innovators and global contributors.

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

#148

Post by JRandomHacker42 »

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

> Being a programmer does not make one knowledgeable about other specialized fields

If I could make every HN user read this before commenting on literally any article...

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

#149

Post by thin_carapace »

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…

if you ever want to read what happens when your brain breaks and you don't have a neurologists number in your back pocket , feel free to peruse the subreddit r/antipsychiatry

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

#150

Post by burntsushi »

burntsushi wrote: post #125
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 asked my wife about it since she has more context on the chance encounter with a neurosurgeon who was ultimately responsible for the transfer into Brigham and Women's. She said there were two things of note that led the neurosurgeon to step in (according to the neurosurgeon): Decompensating at an increasing and alarming rate, not typical from a psych perspective. Also not in a healthy young male with no history. My…

> My wife was able to substantiate this claim with my detailed timeline.

Sorry, my bad here. The timeline wasn't mine. It was Kait who had built it and took on the burden of sharing it with everyone she possibly could.

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