I’m not entirely sure why I’m mentioning this, other than I sympathize deeply with your wife. What an absolute ordeal.
Really glad you can smell it on people, smell is a powerful diagnostic tool that few people are trained on.
At the hospital, I saw a gastroenterologist who specialized in Celiac, because I had just been diagnosed with Celiac a year earlier and many of my symptoms seemed related to digestion. He absolutely should have done diabetes tests. On the last day of the 2 weeks I was there, he said "It could be type 1 diabetes... some people get that too" but didn't order any tests. When I was diagnosed at the ER another year later, my glucose was 650 (very high) and had been averaging 300 (it should be ~85). So yeah, the doctors were negligent, in my assessment.
I was talking to a specialist in a field where a rare condition has started to trend on TikTok. It was also eye-opening to learn how much they're struggling under the weight of bad referrals for patients who don't have the condition they claim.
That's not to say they aren't sick. The patients are suffering from something. However between hours of TikTok and ChatGPT they can convince themselves they have a condition and learn how to convince their primary care doctor to put in the referral
This doesn't work as much for conditions that have objective criteria like blood tests, where it's easy to filter out the patients who have both negative blood tests and a PCP who hasn't tried to investigate other explanations.
An example of a popular self-diagnosis is MCAS: Mast Cell Activation Syndrome. MCAS specialists are overwhelmed by self-diagnosed patients trying to get appointments who have never even have a tryptase blood test. If you go on to any subreddit or forum for chronic health conditions you will find a large number of people there have been convinced they have MCAS, and new members are told they might have MCAS too.
This is creating a separate fatigue among providers who need to keep their guard up at all times so they can maintain focus on the patients who really have these conditions instead of letting their schedules get destroyed by patients who don't. It's a hard problem.
Why would a doctor pay another service to order labs for them?
Sadly there are a lot of clinics popping up to serve the internet self-diagnosers, but not in the way you're talking about. They're built around a single enterprising doctor who either believes the disease is undetectable by normal tests, or who is aware that they're stringing patients along but likes the money. If someone opens a specialty clinic for an internet-popular disorder, they have a perpetual line of patients who will gladly pay for a doctor to tell them what they want to hear.
I have a worsened lifelong issue because of repeated sub-optimal "solutions" to a problem, such that the best long-term solution was found by the THIRD doctor that looked at my problem. "Solutions" from the first two guaranteed my problem will forever be worse than it would have been (solely due to their treatments), if only the third doc's solution had been considered/presented first. Even worse, I was a teenager and young adult when dealing with the first two. My mistake for not doing my own comprehensive research, apparently -- the thing we entrust doctors to do for us...
There are going to be casualties of doctor's triage, and those stories will be beyond upsetting, but most would agree its better than an 8 month wait to get an MRI.
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 of anxiety compared to my baseline.
My PCP did run a bevy of tests (chest x-ray, and took tons of blood) to try and rule out anything biological.
Given what was known at the time, I think my PCP did the right thing. And when my symptoms really escalated (delusions, suicidal ideation, falling and hitting my head), my PCP suggested going to an ER. And that's what we did.
I think it was the ER that really dropped the ball. Given the sudden onset of everything, the fact that they didn't get me in front of a neurologist is, in retrospect, really quite baffling. That's when I went to a psychiatric hospital, where I spent 3 nights.
I only got out of that hospital due to total luck. My neighbor was old college buddies with a neurosurgeon. (We had no idea about it. It just came up randomly when my neighbor was dropping my son off at home for us.) That was the critical connection because he ended up talking to the neurology department at Brigham and Women's, then talked to the psychiatric hospital and was the one who facilitated my transfer.
My wife tried to do it on her own but they wouldn't allow it because I had been medically cleared. She had to give 3 days notice to pull me out. Or otherwise, by default, I would see a neurologist after 2 weeks. According to the psychiatric facility.
I really don't know if I would have made it that long. The encephalitis wouldn't have killed me in that span of time, but I was in an extremely dark place.
I'm also really lucky that this is an autoimmune disorder that has a pretty objective diagnostic criteria: a positive antibody test in your cerebral spinal fluid. You "just: need to have your spine tapped to get that though. Fun times.
I actually haven't been able to get the ED notes from that first ER visit yet. They are in a different system than Brigham and Women's, which made it super easy to read notes in their app.
In the 1980s, AIDS was like that. All these healthy, young people, just started getting these diverse horrorshow problems, then died.
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)
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...
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
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.
https://people.com/tech-pro-uses-chatgpt-to-create-cancer-va...
* 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 universal computing illegal.
* Theres been years where GPU's were being price gouged, 1st by crypto bros, then NFT bros, now LLM bros.
* Cant even buy RAM now.
* They put e-fuses into hardware now, comes right out of the factory as ready made e-waste that cant be repurposed.
* The biggest platforms, Android and iOS, are walled garden, locked down, corporate nightmare worlds. And there is practically no alternative.
* Social media is making people depressed and also very easy to manipulate en-masse by anyone willing to pay.
* Moore's law stopped and software bloat overtook performance gains.
* VR might have been cool but it was pre-enshittified in its nascent stages. Freakin' facebook bought Oculus before they had released a single headset.
Best of luck to you, and get well. I’m glad it didn’t get even worse before it was treated.
[1] - https://www.cdc.gov/nchs/data/dvs/MortFinal2007_Worktable23r...
This seems remarkably high.
That's not true unless HN readers are a representative sample of the overall 25-44 population, which they aren't. Higher-income/SES is associated with a lower mortality rate than the overall population average.
7K/year is for the healthy, affluent, tech-worker-heavy population already. For the general population, US, is ~ 12K/year.
Not that higher-income/SES is necessarily representative in a supposed 5m strong HN readership - it would be all kinds, from all around the world. SV startup / FAANG types are just a small slice.
Whatever the exact number may be 7000 is going to be a pretty reasonable ballpark, and it's certainly orders of magnitude higher than most people would expect.
I first found you years ago from your nfldb project: https://github.com/BurntSushi/nfldb and since then have used xsv and ripgrep.
Also, thank you for participating in the clinical trial. I pivoted my tech career several years ago to focus on that industry (the tech isn't great, I'm trying to help that). Along the way I've learned how important it is to participate in this research, it makes a massive difference so 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!
I feel like there's a burntsushi joke hiding in there somewhere.
All the best Andrew.
(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.)
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 my projects and users.
Fourthly is that it's just practically useful to have a link to send to someone when I reference this time period in my life. :-)
> very new diagnosis
Yes! Discovered in 2007. Wild.
> so if you are reading this burntsushi, thanks for being open about something deeply personal, I hope I would have had the courage to do so myself.
<3 <3 <3
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?
This is where AI like ChatGPT shine because they won't just dismiss you.
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
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.
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.
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...
That sounds scary. As someone without any experience with psychiatric institutions or the US health system, I'm curious what people's views are on this.
Consult a lawyer. Participating locations only. etc. etc.
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.
I wish you the best and I'm sure us Rustaceans are happy to help with anything
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.)
I have long-covid and purposely take low-dose Dextromethorphan (just 15gm)
because it acts as a NMDA Receptor Antagonist
by blocking NMDA Receptors, it helps mitigate overactivation of chronic pain and fatigue pathways
it sounds like Andrew was experiencing the exact opposite effects by aggravating the pathways
She was misdiagnosed/undiagnosed for 18 years. I was baffled by this, and I myself have spent numerous hours down the rabbit hole of nootropics, and had a DNA test and was researching myself and how things work and how supplements affect your body and such for sometimes 12 hours a day. (Chronically unemployed, chronically ill.)
We got her a DNA test and I went to work researching everything and comparing the possibilities to her symptoms, we tried countless different supplements that could help... And eventually one did, it wasn't a cure but it was a relief she had never felt before. That was Quercetin, which is a mast cell stabilizer. It took about 2 years of research and trial and error to find some relief. We took our findings to the doctor and finally got a referral to an internal medicinist who promptly after hearing the symptoms and what has helped diagnosed her and she was out on a proper mast cell stabilizer. She went from being in bed 20 hours a day to being able to fully enjoy life. (Sadly, without me though!)