> 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.

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lukan 9 days ago | parent | next [-]

"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."

In your example of MCAS, the solutions seems simple, do a blood test first, before really involving the specialist?

	▲	Aurornis 9 days ago \| parent [-]
		It’s a little more difficult because the blood test is supposed to be performed during a flare up, so it can be negative in an MCAS case if given at the wrong time. Primary care doctors don’t want to gate the diagnosis so they’ll send the referral over and hope that the specialist will do the work of filtering out the likely and unlikely cases. The everything-is-MCAS people on the internet use the fact that it can be negative at times in MCAS patients as a wedge to justify ignoring negative test results. In practice it’s not that hard to give someone a standing order for the test and have them get the blood draw when their symptoms flare.

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randerson 9 days ago | parent | prev | next [-]

As someone who is currently going through the diagnostic process for MCAS with a specialist:

A negative Tryptase blood test doesn't mean you don't have it, it could just be that you're not having an active flare-up at the time. So they also prescribe high doses of H1 and H2 blockers and then you report whether symptoms have improved across 2 or more organ systems after a few weeks.

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BrannonKing 9 days ago | parent | prev | next [-]

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.

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fragmede 10 days ago | parent | prev | next [-]

Not to be a capitalist about it, but given the US health care system, and the fact that there's a diagnostic test for it, that sounds like a business opportunity. Setup an intake website where the customer, err, patient, fills out their information, submits their insurance, and answers a questionnaire, and then the teledoc web portal system gives them lab work to do. Charge the patients for the privilege, and also charge the doctors to use this screening process.

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Aurornis 10 days ago | parent | next [-]

> and also charge the doctors to use this screening process.

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.

	▲	Obscurity4340 9 days ago \| parent [-]
		I dunno, LifeBAC's a good example of something thats not really in line with what you mentioned but has good reason to exist given the typical relationship most people have with their drs

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dzhiurgis 9 days ago | parent | prev [-]

> Not to be a capitalist about it, but given the US health care system

Whats that supposed to mean? Most countries have private healthcare too. Sometimes it is as popular as public i.e. Australia 45% is private vs 55% in US.

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russelg 9 days ago | parent | next [-]

In Australia, this is mostly because there are tax implications for not being a private health care member past the age of 31 when you earn over a certain amount. Our public system is great (and actually exists).

	▲	tacticus 9 days ago \| parent [-]
		> In Australia, this is mostly because it's an attempt to starve funding from the public system. (Howard was responsible for destroying the first universal healthcare system in australia before the later second attempt) The private hospitals specialise in elective uncomplicated day ops because the returns from the medicare payment are better than complicated cases that get the same fixed payment. It's also why they transfer anything slightly complicated into public hospitals.

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fragmede 8 days ago | parent | prev [-]

It seems ghoulish to me to try to profit off someone's suffering, but I'm not in the industry and we all need to eat.

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s5300 9 days ago | parent | prev [-]

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