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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

#51

Post by burntsushi »

fleshmonad wrote: post #32

Glad he had connections to get out of the psychiatric institution. Thinking of all the unfortunate people without the means being incarcerated there with their misdiagnosis, getting put down with antipsychotics

I'm very lucky to have had that connection. I didn't even know I had it until it was there. So I'm lucky on another level there too.

I was put on a low dose of an anti-psychotic. I am in fact still on it. We just haven't gotten to tapering off of it yet. (Other medications have taken higher priority.) Tapering off all of my medications, which is the goal, will take quite some time.

In the moment, I very much welcomed the anti-psychotic. I would do anything to fix what was wrong with me. The problem is that the front-line treatment for anti-NMDA receptor encephalitis (IVIG and steroids) takes a minute to kick in. Moreover, you don't have the diagnosis until later. There was a point in time, before the positive CSF antibody test but after the abnormal MRIs, where multiple sclerosis was a possible diagnosis.

In any case, once I got out of the psychiatric hospital and into Brigham and Women's, an MRI is indeed what I had right away. And that's when the brain lesion was found. But! Not all cases of anti-NMDA receptor encephalitis have an abnormal MRI. Susannah Cahalan, for example, had two normal MRIs. Brain inflammation was only detected indirectly at first because of the "clock test"[1]. And they later did a biopsy on her brain to confirm.

In retrospect, yes. I think I could have done a better job of advocating for myself on my first ER visit and demanded to see a neurologist. But I didn't know what I didn't know, unfortunately.

[1]: https://www.encephalitis.info/news/brain-on-fire-susannahs-r...

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

#52

Post by epcoa »

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…

Absolutely not to defend what happened but that GAD diagnosis sets in motion the anchoring, because now you have an “established” (and recent) psychiatric diagnosis and it’s all too common that an ED is going to heavily prioritize this as a progression. EDs are just very bad in general about reconsidering a differential for a (new) chronic condition unless it’s flashing like a neon sign, especially when there is an easy enough dispo to reach for, transfer to psych in this case. But even worse, you already had an extensive outpatient workup to hang their hat on. From the history provided the history of a fall is the only thing mentioned that sounded like a slam dunk brewing neurological deficit, and it is not very specific, half the ED are people that fell. I’m sure you’ve read the MDM portion of the ED note, it may or may not give some idea of why neurological conditions were dismissed. Very unfortunate.

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

#53

Post by anakaine »

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?

It is such a standard panel its not funny. That said, a psychologist is not an MD and cannot order labs, typically.

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

#54

Post by riquito »

I whis you the best, you teached me a lot with your blog posts and code, and your software had an impact in how I use computers. You are probably the only developer alongside Torvalds that my wife knows by name (well, nickname) since whenever you do something cool I feel the urge to share my excitement with her

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

#55

Post by burntsushi »

mcspiff wrote: post #42
burntsushi wrote: post #8

Earlier quoted context omitted.

Thank you. There were lots of reasons that went into me posting this. First and foremost is that this is a disease of chaos that is prone to misdiagnosis. I want to shout this from the roof tops to spread awareness. I don't have a ton of reach, but I have some, and I want to use it to amplify things like this. Second is that I'm somewhat naturally open about these sorts of things. Third is I feel a responsibility to…

> Third is I feel a responsibility to my projects and users. I feel like this should be a bit of a two way street. Is there anything we can be doing for you? I see there's an option for GitHub sponsorship, would that still be your preference?

Honestly I think just a heap of patience while I catch up with a couple months of doing essentially zero work. That would be the best.

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

#56

Post by fragmede »

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…

Man's best friend is the best friend to experiment on (instead of humans). Working mRNA cancer vaccine.

https://people.com/tech-pro-uses-chatgpt-to-create-cancer-va...

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

#57

Post by ZpJuUuNaQ5 »

>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 psychological symptoms, nor was there any obvious biological explanation for the physical symptoms at the time. This was only the beginning.

Interesting, I had similar symptoms 5 years ago, including trouble swallowing which in itself induced a sort of panic. Also, I have experienced 6 "attacks" (not sure whether a panic attack is the right name) in two days, that felt like all my limbs were numb (with that tingling feeling you get when you keep your limb in an awkward position for too long) and tightly wrapped in duct tape, accompanied by rapid breathing, fast heart rate and dizzy vision. I wasn't diagnosed with anything specific and it went away on its own, but later the same year I started feeling occasional heart flutters as if my heart was going to jump out of my chest. Got tested and was diagnosed with a 2nd degree AV block. To this day, I have no idea what caused this and whether the two events were even related. Life can slap any one of us in the face in countless ways. Creatively vicious.

Glad your prognosis is quite good. Wishing you a fast and full recovery.

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

#59

Post by fragmede »

giantg2 wrote: post #25
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…

"the biomedical world needs to go through the same boom that tech went through in the last 20 years." Not going to happen with all the regulation. Plus, I think half of us techies got into it for games and boobs (bypass parental controls). Not a lot of that same adolescent motivation in that field.

Yeah, but the culture surrounding computers now isn't the same as when whenever you grew up. The last few decades of tech didn't have ChatGPT to contend with. These days, going into medicine looks a lot more future proof than getting a CS degree.

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

#60

Post by tsol »

freediddy wrote: post #46

The first thing I would do with any sort of weird issue remotely associated with my brain is to get an MRI. I would pay for it out of pocket if my doctor denied it or said it was psychiatric. Trust no doctor 100%, especially when they dismiss your symptoms as hormonal or psychiatric or anything else that doesn't go through a thorough examination with all available technology. This is where AI like ChatGPT shine becau…

Not sure why this was down voted but there's truth to this.

I quit an SNRI antidepressant twelve years ago and for ten years I had horrible migraines, inability to form sentences, constant anxiety, low motivation, and other symptoms. Doctors just diagnosed it as depression and me having problems.

I knew something was wrong and I suspected it had to do with withdrawal from my old antidepressant. I read online and found others saying something similar. Gemini was able to help me confirm with and provide resources from specialists about this because the average psychiatrist knows nothing about this.

Finally I had a name for my issue-- protracted SNRI withdrawal syndrome. Trying to get off the medication too quick put me into some kind of continuous withdrawal. After confirming this I got back on the old medication and slowly reduced the dose this time.. I feel better than I have in 10 years.

Doctors still don't understand it and sometimes when I mention it to one(I have a few in my family)they just say "that's not supposed to happen". Never put your health solely in another person's hands. Utilize every resource available to you, even the most educated doctor in the world cannot know all there is to know about their field

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