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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

EDS and co are notorious for that; the symbol for various EDS organizations is a zebra, because doctors get patients with joint problems and think "arthritis, but they're a bit young, weird, oh well off to the rheumatologist" and before you know it you've seen various professionals and no diagnosis.

There's also HSD, which has a lot of overlap and may yet be a subtype of EDS, but the genetic marker hasn't been found yet. And when you get a patient with the full associated combo of symptoms [0], each of which only reveal themselves or become problematic over a long span of time (e.g. eye problems at young age, period problems / endometriosis as teenager/adult, neurodiverse conditions only diagnosed in 30's, severe joint problems and fatigue in late 30's, etc), few people will actually link them together as possibly having the same single cause.

But thanks to the internet, people with symptom X will find other people with symptom X and before you know it you have a group of people that are like "Hey, we all have symptom X, Y, Z, A, B and C, what gives?".

[0] https://en.wikipedia.org/wiki/Hypermobility_spectrum_disorde...


The last I knew, EDS and HSD are mutually exclusive. HSD is typically diagnosed because you have hypermobile joints, fatigue, brain fog, POTS, and other symptoms, but you lack the very specific genetic markers that hypermobile EDS requires.

The real problem is twofold. One is that EDS had historically been a diagnosis of exclusion, and a lot of the diagnostic tests were difficult. The second is that the disorders overwhelmingly affect women, and women tend to get ignored about chronic pain and fatigue.


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.

Anecdotally: an endocrinologist diagnosed me a macroprolactinoma just by seeing me entering for a consult about another problem.

"You're here for a prolactinoma?" "Nope" "I'd like to get this blood work done tho"

One week later the blood work confirmed her hunch.

Experience can get some crazy results.


Did they state what made them have that hunch?

It’s interesting the (consistent) list of conditions that one struggles to get an AMA doctor diagnosis for.

It’s because for whatever reason a large number of doctors do not fundamentally believe some of these conditions exist (especially with syndromes with no clearly understood underlying cause).

I could not tell you the number of doctors who have rolled eyes at the mention of ehlers danlos and hypermobility disorders.


What were her symptoms?

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

Is oral Cromolyn/Ketotifen available OTC or just by prescription? My search only revealed nasal sprays containing cromolyn.

I know someone with what we thought was MCAS, but it actually ended up being Alpha-gal Syndrome. Knowing that made the whole thing much easier to deal with.

Thank you. This is good info.

Check out Ketotifen

My wife was diagnosed with several chronic conditions in the last year. AI tools both diagnosed her before a doctor did (which helped us find the right docs to care for her by figuring out what to look for). One of her conditions (Mast Cell Activation Syndrome) comes with a ton of dietary restrictions. Its helped us immensely in planning meals and identifing food triggers. All of this would have possible with out AI as a tool but would have led to much more pain and suffering and likely taken much longer to figure it out. It's easy to dismiss (especially given the hallucinations) but it's been legitimatly life changing over the last year

Maybe not specific advice for your situation but I've always found this poem moving and valuable when it comes to building comfort in being alone. I hope it helps you too https://youtu.be/k7X7sZzSXYs?si=LwCMyP0L2vsllHJl


Looks like an undersea cable to me


> Why turn a junior into a senior yourself if you can get the competition to pay for it instead.

Reminds me a bit of the quote

The manager says "what if I train them and they leave?" And the response is "what if you don't and they stay". Leaving unskilled and underdeveloped people in you organization is a recipe for disaster.


I also see the argument as a macro one not a micro one. Some bubbles in aggregate create breeding grounds for innovation (Hobart's point) and throw off externalities (like cheap freight rail in the US from the railroad bubble) ala Carlota Perez. That's not to say that there isn't individual suffering when the bubble pops but I read the argument as "it's not wholy defined by the individual suffering that happens"


That assumes a certain kind of ad though. Even a "pu ch the monkey" style banner ad would be a start. I can't imagine they wouldn't be very careful not to give consumers the impression that their "thumb was on the scale" of what ads you see


"Soul" is one of my favorite books. Kidder writing is phenomenal. He explains complex topics with ease and the storytelling drags you in from introduction. I also think it might be the best example of what great management looks like. Tom West isn't the focus of the story but without his hand none of it could have existed. Cannot recommend highly enough.


I just finished this book a few weeks ago, it was excellent. I don’t normally read nonfiction, and when I do I avoid reading about business or technology. Despite this book being all 3 of those things I highly recommend it.

One of the most thorough and well written pieces of journalism (it reads like a book-length magazine feature) that I’ve ever encountered. The characters and company felt so alive.


I also like his House. Unfortunately the topics of his other books haven't grabbed me sufficiently to pick them up.


I guess the question is should the makers of lockpicks be punished for how they are used (or for that matter be stopped from distributing their lockpicks). There are plenty of commercially available products that can be use for illegal activities but we don't prevent them from being sold (let alone given away for free)


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