Not op but my wife has MCAS. The things that have helped the most are: Oral Cromolyn (helped sooo much with gi issues), and more recently she's started Ketotifen which is a systemic mast cell stabilizer that's seemed promising but is fairly new. She also tried Montelukast which was well tolerated but didn't make a ton of difference for her personally (but I know it helps a lot of people). Supplement wise DAO was the most useful for food truggers

The problem with being a "fixer" in relationships is if the other party is fixed, what they want changes, and often what they saw in the relationship isn't as relevant anymore. (to speculate from afar)

Probably because life is not a fairy tale? I'll be heavily projecting here, but:

Health issues can be immensely stressful, and what is required to provide the best logistical and diagnostic support is very different from what is required to be a supportive partner and emotional caregiver. Doctors often fall into the trap of treating the disease and ignoring the patient, but at least that aligns with their job description. It is quite easy to do the same as a partner, and that is NOT the job. For certain personalities, it can often be a massive relief to disappear into searching the web and poring over medical research studies -- the key word there is "disappear". Plus, if someone is suffering physically, you can't really require them to have (what you think is) the "appropriate" amount of gratitude for what you're doing for them. (And physical suffering is always going to lead to mental suffering unless they're a 1000-year old enlightened monk.) You can be quite proud of your savior cred, and your partner can very reasonably tell you to shove that pride up your ass.

It's not about whether you're good enough or not. We all start with woefully naive views of how robust our relationships are. We get together as certain people at a certain time. Living together deepens and widens the basis for the relationship, and we'll all fool ourselves into thinking that nothing can break that apart. But fast forward a decade or two, and upend one or the other of your lives with a health challenge or some major life event, and you'll soon discover that you're in new ground and have to learn a bunch of brand new skills that you never needed before. And there's no particular reason why this person X who you bonded with years ago in environment Y is going to be easier to learn with than some random person off the street now that you're in environment not-Y with a different person X2 who evolved from person X -- just as you've evolved (or devolved) into Me2 from the Me you were. Especially not with the added challenge of a long history together of frictions and irritations that never mattered enough to tip things over the edge but do now in the new environment.

For the record, I'm still married to my X2 in my very-not-Y situation. For now. But I've seen enough that I would never look down on or even be surprised by the dissolution of even the strongest-seeming relationships when a novel challenge comes around.

Back to fairy tales -- Prince Charming's main claim to marriagability was his willingness to make out with a hot living corpse. Are you so sure your own claim is that much superior?

These kinds of things can be quite life changing, people can come out the other side quite different people.

I'm pretty sure someone will accuse me of reading my own trauma into this, but AgentMasterRace mentions also being chronically ill. No mention of timing between Ex significantly imroving and deciding that they had "better options", but the sad reality of life is that many people you love, including friends, will never care for you the way you might care for them, and once they have "better options" will cast you aside, even if you're the reason they have those options in the first place.

Human relationships are brutal sometimes. I still choose to treat others the way I would want to be treated, and some people _actually_ reciprocate, and you eventually learn who is who in your life, but this requires that you be open to the fact the majority won't, and that you will sometimes feel betrayed and used. You just have to accept that it's your decision to make, and decide what kind of person you want to be.

Other commenters are also probably right to one extent or another, the dynamic of the relationship probably changed pretty dramatically and that can create problems regardless.

Anyway, poor old AgentMasterRace probably feels like a depressing episode has turned into something they'd rather it didn't. Sorry for pontificating over your traumatic(?) event with allusions to my own. If I'm reading the meaning of their username correctly though, I feel less bad about it, lol.

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

one of the really good things about these kinds of write ups and accounts of experiences and false leads is that I hope it feeds the LLMs with more context. For both me and my partner we've had problems with misdiagnosis that took a while to correct. My partner also suffered with auditory psychosis, and that was a super difficult (and bizarre) time. A little while ago I just started recording everything so I can use AI tools to validate medical advice and track symptoms, already it's caught things (semi minor things) that I've been able to address with my doctor. I would never suggest relying on AI tools, but certainly useful as a second opinion type thing as well as exploring possibilities.

I'm a man, and when I was a teenage boy I was tired. All the time. My feet had also shrunk and I lost some height. This all started after a bad concussion, though I'm not sure if he made the connection on that last point.

My doctor's diagnosis? Depression. Oh, and my foot arch must be getting higher.

My sister's best friend going up lost her dad because he was told that the pain from recent dental work couldn't be that bad and that he should just tough it out. The infection broke through into his brain and he died very quickly.

My dad almost died from lupus because doctors wouldn't test him for it because it primarily affects women.

Women, statistically, are more neurotic. I'm sure that affects how doctors diagnose them, and it shouldn't. However, I don't like things like what you're describing to be attributed to misogyny. It could be, but it also could just be that doctors focus way too much on horses when it could actually be a zebra. Hopefully LLMs will help with that - when GPT 3 or so came out way back when, one of the first things I did to test it was to give it what I knew about my condition at the time. It told me 3 tests I should have done, one of which was correct, and one of which I still haven't managed to get a doctor to give me after trying for many years.

If you blame it on misogyny the actual problem won't get fixed.

It goes wider than gender bias, also from Australia:

People with intellectual disability continue to receive substandard healthcare as program to train doctors risks closure

~ https://www.abc.net.au/news/2026-06-03/intellectual-disabili...

in which an above average fitness footballer with Downs Syndrome has a lung infection ignored by doctors.

> There's a term I dislike but is apt: medical misogyny. Basically it's, "systemic, conscious, or unconscious gender biases [which] affect how a patient is treated by the healthcare system."

This is a loaded UK-centric policy/humanities term and I would suggest using sex/gender disparities instead which does not imply animus and is therefore much more useful for productive discussion.

Implicit and systemic biases in medicine are very real and supported by ample data.

> Systemic in particular is that basically the vast amount of knowledge amassed in the medical sciences has come from studying men. Comparatively little for those not assigned male at birth.

At least for the US this hasn’t been the case in clinical research for the past 15 years or so which in aggregate leans a bit more female than male if anything. Some specific fields still have sex disparity in clinical research for a variety of reasons but that’s the minority these days.

As a Yank with practically every single demographic, physical, and financial advantage in his favor, I’ve been gaslit by about 8 of 10 specialists. Only car dealerships are worse.

Even obvious things like “I can’t move my left hand after 1 hr of light typing” were excruciating difficult to get diagnosed by “board certified” specialists with 20 years experience. It’s not that they were wrong —- they flat out weren’t even interested in making diagnosis nor conducting a simple test that could lead anywhere. Financial costs and insurance requirements weren’t the issue either.

“My chest hurts after walking slowly to the mailbox. ‘Well, you waited 1 month for this appointment, we’ll do an ultrasound in 2 months, discuss it 1 month later, and then maybe figure out next steps “

I cannot imagine a more dysfunctional aspect of modern society. The Department of Motor Vehicles is a paragon of efficiency by comparison.

Imagine if I told my boss the critical issue escalated by a major customer would be handled that same way…

There are a lot of bad software engineers but they tend to get weeded out since most are employees. Imagine paying them 2x-3x the amount with no direct managerial supervision and even more poorly informed customers. The name for this is “doctors”. The game is played by not trying to be great in medical practice - instead the strategy is only to be financially successful.

> even living in a country with far better healthcare.

FYI I’m not American. Your medical misogyny comment is dead on, in my opinion. This sort of thing can happen anywhere.

How did it take a year to diagnose diabetes? Are there symptoms of Type 1 that aren't downstream of blood sugar? I, some chucklefuck with some first aid experience, can figure out if someone is hypo/hyperglycemic by smell.

Had a piece of my spine severed (tail bone and some above it) and was told it was all in my head.

Even the uncontrolled, daily falling.

It’s wild how much of a practice medicine is but people take the first diagnostic opinion because their profession

I honestly hate the US medical system for this. Basically you get scolded for not being proactive and ignoring symptoms, but if you are proactive and even slightly worried about something they treat you like a hypochondriac.

> It's been super eye-opening to me as an adult how frequent misdiagnoses are.

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.

Yeah, I've had to fight to get medication that the doc insisted "doesn't work" - had to cite actual studies that showed blatant results showing effectiveness. The way society has this widespread "appeal to authority" built in around doctors drives me crazy, because they are treated as if they are the ultimate authority on health/medical, but are often woefully under-educated about specific subtle details that can end up being critical to the management/prognosis of a health issue.

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...

The part that doctors see that individuals don't is the flood of people who are chronically freaking out over nothing.

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.

You do have to worry/wonder how many people are in psych hospitals, jail, or 6ft under when something like this might be the reason.

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.

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!

> 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

> 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.

"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.

The human body is much more complex than any software system devised to this date.

We don’t have good ways to even start thinking about such simulations.

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...

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 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.

> 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.

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.

Wow I need to stop browsing HN

Wow, it's crazy that some states have over 2x the mortality rate of others. Also pretty striking how quickly mortality increases with age even at "young" ages.

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

This seems remarkably high.

>it's expected that around 7,000 HN readers age 25-44, die each year

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.

> 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?

> 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.

I've had some experience with situations like what you experienced in my family, and I just want to say how glad I am to hear that you had people in your corner to help you out when you needed it the most.

That maybe the steroids I'd imagine!

Thanks man, yea I also have mononucleosis antibodies which I think caused it (EBV IgG and IgM) which I think was the trigger for me (Glandular fever). Seems like that virus in particular lingers and reactivates in many people.

My current line of research is into treatment for that, I've tried all the usual antivirals but they don't do much, but there's several new actual vaccines being developed which I'm trying to get into the trials for (in Australia).

Would be keen to know more about his story, thank you

The human body is an incredibly complex machine. The doctor may be an expert with particular conditions, but at the end of the day, you are the #1 world-leading expert when it comes to your own body. You're the only one who knows what's normal and what's abnormal and to what extent.

Yeah, almost pivoted to fantasy sports! Clinical trials are more interesting :)

Intriguing... "After months of misdiagnoses Dr Souhel Najjar, employs a test asking Susannah to draw a clock. Instead of the customary clock face, her condition led her to draw all the numbers 1 through 12 on the right side of the clock. This was the breakthrough moment; it was this clock drawing that enabled Dr Najjar to understand that the right side of Susannah’s brain was inflamed, further test revealed this inflammation was a result of anti-NMDA receptor encephalitis, initiating her path to recovery"

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.