Hacker News Board Hacker News, browsed like a classic message board
Live data from Hacker News

I was recently diagnosed with anti-NMDA receptor encephalitis

burntsushi.net

Post reply on HN
Print view View original

171–180 of 271 posts

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

#171

Post by dbancajas »

@burntsushi thanks for sharing this. A few of the symptoms you described felt painfully familiar to my aunt who's still undergoing AE treatment and is deteriorating after a short recovery.

She's 59y.o. living in the Philippines and was recently diagnosed with autoimmune encephalitis after initially being misdiagnosed as having a mild stroke and later psychosis. She had balance problems and fell down while sweeping the floor. She developed language problems. So she knew what she wanted to say but couldn't get the words out. My mom and I thought it was mild stroke. Over the following weeks she developed seizures, required a feeding tube and ventilator support, and is currently undergoing treatment in Cebu Doctor's Hospital, Philippines.

If anyone here has experience with autoimmune encephalitis, patient advocacy groups, research programs, financial assistance resources, or treatment centers that might be helpful, I would be grateful for any suggestions.

My family has also put together a fundraiser to help cover her ongoing treatment costs if anyone would like to learn more. We'll provide weekly updates and full transparency. Mods, I hope you allow this link: https://www.gofundme.com/f/help-save-rowenas-life-from-autoi...

If not, my email is in my profile and you can DM me. I can't post pictures of her with her current state because I don't have consent. The one picture I have of her current state is also censored.

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

#172

Post by burntsushi »

glerk wrote: post #86

I am glad you were able to find the root cause and get treatment, and sorry you had to go through this. I hope we will soon remove “psychiatry” from the domain of medicine completely and start addressing actual biological issues directly.

The interesting bit here is that getting to talk to a psychiatrist was one of the main things that "excited" me about getting checked into a psychiatric hospital. My understanding, at the time, was that they crossed the lines between biological and psychological. A psychologist with an MD, if you will. That seemed, at the time, like exactly the kind of inter-disciplinary doctor that I needed.

There was no psychiatrist that I could see at the ER as far as I know. I had to get checked into the psychiatric facility in order to see one. So that was another dimension here where I was enthusiastic about going, and probably made the decision by the ER to send me there easier.

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

#173

Post by burntsushi »

komali2 wrote: post #146

> 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, A…

I went to my doctor an entire month before that.

It took a fall and a hit to the head to go to the emergency room.

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

#175

Post by burntsushi »

est31 wrote: post #117

Horrible to hear this news. Neurological diseases are the worst because we understand so little about them and usually there is no cure, just management. What have your experiences been with using AI for medical advice? Especially for such rare diseases I suspect that very little shows up in the training data. Personally I'm using AI only for work and only recently started using it for non-work non-coding stuff too.

> What have your experiences been with using AI for medical advice?

I had been trying to use Gemini during my bout of encephalitis before treatment. I wasn't really trying to diagnose myself, but instead, was looking up side effects of the various (psychiatric) medications I was on. At the time, I (but not my wife) had thought all biological causes had been ruled out due to testing from my PCP. To be clear, I wasn't really in my right mind, so whether this was a reasonable belief or not (likely not) isn't something to be assumed. Like, I just thought I had GAD. Or OCD. Or something latent that had just all of a sudden started rearing its ugly head.

I found Gemini's reporting of side effects of medication to not be helpful. Especially because it led me to wonder if some of the things were "in my head" (without a doctor even needing to say it). Anyway, there was never a point at which any AI suggested anti-NMDA receptor encephalitis. That didn't really come up until I got into the hospital and had an abnormal brain MRI.

I've since switched to ChatGPT, which I find to be leagues better than Gemini personally.

This is all really hard to explain, so I apologize if this doesn't make a lot of sense.

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

#176

Post by bonsai_spool »

sodafountan wrote: post #168
bonsai_spool wrote: post #33

Earlier quoted context omitted.

> 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

I agree that being a programmer doesn't make you an expert at everything, but OP brought up a good point. Tech is a lot more accessible than other fields. It would be nice if I could pivot into other fields as easily as someone could pivot into tech. Aside from going to college for many years, there's really no other way to break into the medical field. College is expensive and quite daunting to many (myself included…

The reason you can ‘pivot’ into tech is because you’re able to run programs and see their output on your own device.

You can do some data-oriented research at home, though you’d also have a lot of reading to do first.

Medicine requires seeing patients and their ailments and their recovery - not something we’ll ever be able to simulate well (for many reasons).

You can get a good medical education all online, but nobody will accept you’re not having seen patients

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

#177

Post by randerson »

nextos wrote: post #158
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

What treatment did your wife receive? Did she improve? Did doctors confirm Ehlers Danlos with genome sequencing?

90% of EDS sufferers have the Hypermobile variant, for which there is no genetic test. At least thats what I was told by an EDS specialist a few years ago.

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

#178

Post by nextos »

randerson wrote: post #177
nextos wrote: post #158

Earlier quoted context omitted.

What treatment did your wife receive? Did she improve? Did doctors confirm Ehlers Danlos with genome sequencing?

90% of EDS sufferers have the Hypermobile variant, for which there is no genetic test. At least thats what I was told by an EDS specialist a few years ago.

Yes. However, there are some polygenic risk scores for EDS. While not approved for clinical practice, they can serve as guidance.

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

#179

Post by sheepolog »

haldujai wrote: post #155
sheepolog wrote: post #128

Earlier quoted context omitted.

All the more reason to have better diagnostic tools (not to mention faster imaging)! All humans are fallible; I hope one day diagnosis is the easiest part of a doctor's job.

You’re assuming a diagnostic test can be designed for 100% accuracy and this is not possible as disease states are spectrums not discrete categories. “Normal ranges” in lab values are just confidence intervals of population means which by definition that some normal people will have abnormal values and some patients with a disease will have normal values. The same is true for imaging. For example we use size criteria…

Eventually, diagnostic systems (whether AI or human+AI) will significantly outperform current human doctors.

If humans have different normal ranges, then the tests will be specific to the individual, based on their health history, DNA, tissue simulation in digital environment, etc. If adrenal nodules of similar diameter behave differently, then the tests will inspect more than just diameter.

The data to make the correct diagnosis is out there, we just don't have the tools or processing power to use it yet.

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

#180

Post by insaider »

I wonder how close this disease, and the similar ones in the comments, are to a general 'chronic fatigue sydnrome' diagnosis is. Which I've been dealing with for a decade. Definitely a strong autoimmune component to it...

In case this might resonate with someone but from the 100s of tests i've done, the most significant result for me was a 5x normal renin, which led me to eventually try fludrocortisone, the first time i finally felt 100% relief but only for a couple of days before sliding back into fatigue...

Count yourself incredibly lucky OP that you both got a diagnosis and also have such support around you. It's tough out here

Post reply on HN