This poor woman. I feel like auto-brewery syndrome is well known enough in pop culture that I am somewhat stunned it went so long before anyone considered the possibility.
For every case of "It took 8 doctors over the course of 3 years to get a diagnosis" there are 5000 cases of "It took 1 doctor on one visit to get a diagnosis"
But in this case, I don't think it would be "incredibly wasteful and expensive." The case study stated, "On her ED visits, she was discharged with the diagnosis of alcohol intoxication, despite her reports of no alcohol intake, corroborated by her family." She didn't need some expensive diagnostic test for a diagnosis, she needed a doctor to pay attention to what she and her family were saying.
As someone with a relatively obscure condition, I’ve gotten used to being the pachinko ball that falls straight down the diagnostic chart to the wrong conclusion. But I understand the numbers are against me.
I'd rather them disregard their bias than disregard their patients. If someone insists they don't drink when challenged with the BAC data (especially with corroboration like in this case), do a test to determine if they're lying or not. Don't just assume they're lying.
But doctors often are arrogant and unwilling to admit error, even to other doctors. The best you can sometimes do in those situations is to get bossy and try to take control of the situation (e.g. I know you're assuming I'm a lying alcoholic, but I don't drink, so explain to me how I could be intoxicated without drinking...what tests would you need to prove that...), but not everyone has the confidence to do that or to do it only when it's needed.
Some of my big breakthroughs came in ER visits where they are a little more focused on problem solving and less on getting you out the door in time to keep to schedule. It doesn't live up to the fiction of House but sometimes if I had good rapport with an ER doctor, they took a few minutes to think about how best to keep me out of their ER in the future.
This sometimes got me what a relative called "real drugs instead of tea and sympathy."
We have a broken system. I don't know how to fix it but some of the criticisms of specific people in the broken system implicitly assume "These people are the problem!" And that doesn't really fit my firsthand experience.
I actually had a great ER experience along these lines. I felt bad being there after it became clear that I was going to be fine while there was a lady wailing in pain about 10 feet away, but at least I left with a lot of things to discuss with my regular doctor and I at least knew when I should/shouldn't worry in future situations.
Is that fair? No. Does a medical professional have an obligation to take a patient seriously? Yes. But I bet busy physicians have an hard time avoiding being biased by direct experience with unreliable patients: drug seekers, people with mental health issues, people who want the drug they saw on Fox News ads, etc.
What's the threshold for where doctors should begin to believe their patients' claims, as opposed to simply assuming they're merely some drug addict seeking another hit or someone lazy seeking time off work?
I'm someone who's specifically had GI doctors ignore what I say so intensely as for this conversation to have seriously taken place:
Me: "The [medication] might have worked, I feel slightly better, but it was way too strong. I had nearly all the major side effects that the instructions said to contact you if I get them. Is there any smaller dose, or could I try out something else?"
GI Specialist: "Ok, so would you like me to increase the dose? I can prescribe [double]."
Edit: meant to conclude that I think it's not just excessive distrust, and that it'd be absurd and cruel to just always distrust patients completely -- that doctors definitely seem to ignore patients heavily, especially if they're in any way abnormal.
Also, Did you consider just taking half the dose?
And as for dose, it was a medication measured in micrograms -- I'd have to be able to carefully measure microgram amounts and put them back into new capsules, it wasn't very realistic. I wound up finding alternatives on my own.
As an aside, I actually have FAR worse stories of GI doctors being incompetent and careless, that one just seemed the most relevant to the topic there.
One other funny one seriously went like:
GI Specialist Dr., "No, you can't really be feeling pain there, the intestines don't have any nerves"
Me, "So why did you say I needed to be sedated for my colonoscopy because it would be too painful otherwise?"
Dr, [angry response about if I want to just argue or let him do his job]
If you can't tell, I soon switched doctors after. But overall that sort of encounter, or things like even violating their own medical association's recommendations such as with prescribing PPIs and Antibiotics simultaneously to a patient already at higher risk of c. Difficile or more than one doctor not being aware of which painkillers are NSAIDs (Yes, really! One GI and one Urologist) has really reduced my trust in specialists, at least in Texas. They so, so, so often seem to just ignore or disbelieve patients.
I get being frustrated to work with a bad doctor, but the outrage seems deeper, like people are frustrated that they even exist.
One would expect a nurse to know less about which medication is likely to produce the best outcome in a given patient than a doctor, but the opposite is often the case due to some mix of the average doctor’s ego, and their investment and presence around patients over prolonged periods.
Many doctors appear frustrated that patients exist, they’d rather just look at a list of symptoms and write a prescription without acknowledging the individual.
I just think this is delusional. Pay, and education, and accountability do very little to make them superhuman. similarly, just because people dont have good alternatives to doctors, doesnt make doctors good at their job or their expectations rational. That is wish casting, and not how the world works.
I think it is more realistic to think of them like a mechanic who you are asking for advice. They might shrug or give their best guess, but they aren't promising anything. At the end of the day, it is your car and your problem, not their problem. They might try to help, but they dont owe you anything.
I guess I dont think patients are entitled to results or anything else from doctors, besides trying not to leave them worse off and maybe a mild positive intent.
Does a bad mechanic leave you in physical pain and have the potential to leave you suffering worse than before you arrived?
Can you avoid the problem of a bad doctor by just getting a new body?
Remember that the origin of this discussion is in many doctors not believing a woman despite reasonable evidence to the contrary.
Nobody would be outraged if they still were broadly and even justifiably wary but put in ANY effort at all to attempt to at least humor the possibility she wasn't an alcoholic, especially after passing psych screening tests, however primitive.
And sure, she could have gone to doctors other than ER doctors, but that is why I mentioned my own experiences that it isn't very different with (at least some) specialists.
Going a bit back to the mechanic analogy, it's hard for people who are busy and suffering to make extremely well thought out and slow decisions in that state, especially if there's sometimes enough improvement they can seemingly be recovered.
Regarding your questions, I do think both doctors and mechanics have a responsibility to try not to make things worse than if they had done nothing at all. I don't think the doctor is here made her condition worse.
If I have a broken car, it's my responsibility to fix or replace it, not the mechanics. If I don't like the service a mechanic offers, my choices are find a new one, do it myself, or go without.
I think people would be better served if they thought about doctors in the same manner.
Just like they're frustrated if they don't listen at a grade school comprehension level, which absolutely is not superhuman.
Are you autistic by any chance? If so, I recommend trying to think in terms of the suffering people experience specifically because of the circumstances and because of a common social treatment of distrust and inattention.
E.g. I'll be far more bothered by someone who pretends to listen then ignored me, or who actively accuses me of not feeling pain, than someone who merely does a bad job -- i didn't, for instance, complain about my first GI specialist who merely did a bad job but always paid attention and tried to work slightly more than a chatbot in terms of effort put.
And effort too there is relevant, especially someone in a context of great luxury and not insignificant "authority" (i lack a better term rn) afforded by their position.
I think the interesting point for me is the "authority", or social part of it. This seems to be a projection from the patient, and then they get upset that doctors dont reciprocate.
This is what strikes me as screaming at the clouds. Respect, authority, and trust are in the eye of the beholder. To the degree that there is a mismatch between expectations and reality, the error is on patient for projecting a false reality. Then they are angry when reality doesn't match of with their imaginations.
I also think it is weird to place such broad expectations on doctors as a class of people, as if they are all the same. Some are great and some are shit. Most are somewhere in-between.
If the anger is that doctors are paid more, that doesnt make sense to me either, because it is just supply and demand, not some moral social quality of doctors that make them better humans, and therefore deserving of more luxury or financial success. It seems a weird special expectation that people have constructed for doctors. In contrast, Nobody has an elevated moral expectation of bankers just because they make more money.
I just think that people would be happier, and perhaps get better care if they based their expectations in reality.
You shouldnt view health as a responsibility you can outsource to a doctor. No doctor will care about your life more than you do. Doctors come in all levels of competency, and it is your job as owner of your body to shop around. Some people desperately want blind trust and freedom from responsibility, but if they go down that path, they are embracing a fantasy,
I dont think doctors should be elevated to some super-human status. They are human. Many of them do a tricky and socially useful job, but there is nothing magic about it or them.
I doubt it was lack of attention, but lack of trust instead.
When I was a homemaker and having serious health issues, I sometimes wore a suit to see a medical professional to try to get them to take me more seriously. I used to bitch to friends that I felt like pinning a list of my academic achievements to my lapel.
"Oh, it's a homemaker. Must be stupid! Couldn't possibly have been a good student in school! Smart women all have serious careers."
Yeah, sure. That's reality./s
I've continued to drink alcohol in moderation for another 15 years+ without issue.
A coworker of mine had back issues, they only took him seriously when he was brought in via ambulance because he couldn't stand a year later after multiple visits to both his GP and hospital.
And they still didn't take him seriously, they were going to discharge him in a wheelchair until he pissed himself because he had lost all control of his lower body and couldn't even tell that he had to pee.
White guy, steady job and good insurance. To the doctor's it look like someone trying to get pain meds.
Edit to change tone
But it's a factor generally for women. Which doesn't assert men always get fabulous results every time, nor does it in any way "rebut" points other people already made elsewhere in this discussion.
I was just going to ignore the ridiculous pile on to my comment, but it's not stopping. Folks are blowing it out of proportion.
Which may not stop but now I'm on record with that observation.
I wish it really were that simple. I dont think it is.
Additionally, your suggestion fundamentally dismisses my main point: This is apparently a bigger issue for women than men generally.
And when men act like it's unreasonable for a woman to be aware this is a bigger issue for women and to toss that detail out there in public discussion, it's just a no win situation for women.
The people most impacted are routinely treated like they are whiners who should just shut up and accept that no one will bother to care.
And not just about gender. People of color also routinely get treated crappily for being the ones who bring up X issue when no one else will and they bring it up because they are the ones aware of it.
FWIW I hardly look at usernames and judge the comments anonymously, at least at first.
Meet Amanda- will she be able to convince Doctor #3 that she's not a secret alcoholic?
With doctors it's about catching anything that isn't obvious.
If you've broken a bone or have a tumor or one of the standard tests comes back out of range, their job is easy. If you haven't they're completely useless and will prescribe either an SSRI or a stimulant.
Very many people have very many conditions that aren't trivial to diagnose and just get ignored.
It's not because they can't, it's because they're not interested and resources aren't organized enough to be able to give the appropriate amount of attention to a person.
Say there are 500 rare conditions with a rate of 2 per 100k per year. That means one out of 100 patients will develop one of those 500 in a given year.
I found that there isn't as much variety in complaints as you would expect if people were independently making things up to complain about and there isn't as much consistency as you would expect if the complaints were due to social contagion.
There does seem to be spikes around general awareness like when a popular TikTok or famous person is diagnosed with a thing, but it's possible to use the less well known bucket of comorbidities to figure out what percentage of those are examples of social contagion, what percentage do present with these actual conditions, and what percentages are true hypochondriacs. The first group lack the depth of comorbidities that the second group have, and the true hypochondriacs tend to claim they have absolutely everything no matter how preposterous.
From what I found the large majority of those considered hypochondriacs do exhibit the conditions that they believe they have. The social contagion and true hypochondriacs appear to cooccur with mental disorders and are only a small percentage of the cases. I really wish medicine made an effort to distinguish between these three cases to extract the apparent hypochondriacs from the true hypochondriacs and treat them separately.
I think a large number of those with undiagnosed conditions actually exhibit conditions from the hEDS bucket of comorbidities which is especially vast and varied. See https://ohtwist.com/about-eds/comorbidities for an incomplete list. This bucket does include SIBO. So if you have been told by a doctor that you're a hypochondriac and you exhibit SIBO these do increase the probability of you having hEDS. There is an assumption that hEDS requires the person to exhibit excess flexibility and while this does appear to be generally true it doesn't appear to be a necessary condition. A person with hEDS, especially if they are male, may not exhibit any excess flexibility but will exhibit hEDS comorbidities at the exactly same rate as someone who has been officially diagnosed with hEDS which would be rather unlikely if they didn't have also have hEDS. Of course if a person exhibits excess flexibility that would increase their likelihood of having hEDS. What is very unorthodox about about my view is that this flexibility is not an essential component so a lack of flexibility is not sufficient to rule it out even if it does reduce the likelihood.
I was also throwing information over a wall on the off chance that the information would be useful to a third party that may not yet know about hEDS and hEDS related comorbidities.
Not really. SIBO prevalence increases with age and goes up to 80% in elderly patients.
hEDS prevalence is between 0.005% and 0.02%.
The symptoms/diseases you listed are very common. We don’t really use hypochondriac anymore but the reason these are common is because they’re vague constitutional symptoms that have 1000 different possible causes or nothing at all.
> What is very unorthodox about about my view is that this flexibility is not an essential component so a lack of flexibility is not sufficient to rule it out even if it does reduce the likelihood.
There is nothing unorthodox about this, it’s part of the 2017 international criteria for hEDS.
https://www.ehlers-danlos.com/wp-content/uploads/2022/03/Mal...
The presumed prevalence of hEDS used to be 1/50K, then 1/15K, then 1/5K (you are here) and now more recent research has it 1/500 (post 2019). So I don’t take much stock in presumed prevalence given the history of it. What are the odds that they got it wrong all those other times yet completely right this time.
The problem with first presuming this prevalence and then designing diagnostics around it is that of course the measured prevalence using these diagnostics will match the prior assumptions.
I’m of the view that it’s ~1/50 (2%) depending on ethnicity and that >90% of these are rather mild and very difficult to detect yet still show up as comorbidities. I currently don’t have the evidence I would like for this theory, I do have enough for my own beliefs. Until I get my hands on enough relevant WGSs I will not have definitive proof.
Is there a reason you suspect a connective tissue disorder to be the unifying diagnosis? I have not heard this theory before.
The main thing I focus on is the lack of the distinction between hEDS and HSD, there appears to only be a weak association to severity with everything else about it being entirely proportional to the severity. I.e. both conditions appear to be the same thing. There is just so much randomness between individual doctors, and even within the same doctor, that even the severity link is very weak. US doctors especially are reluctant to diagnose with hEDS because of the presumed rarity but also a diagnosis of hEDS can apparently screw up the clients insurance - and as there is no known treatment they don't see the point of doing that. So while it's generally accepted that hEDS is 1/5,000 and HSD is 1/600 I don't see a difference between hEDS and HSD so it all goes into the hEDS bucket. Especially when doctors are also bad at diagnosing the hEDS comorbidities and without those they generally assume they're seeing a presentation of benign hypermobility.
The other thing I focus on is the strong predisposition to Long Covid by those with hEDS/HSD. Dr. Jessica Eccles is doing great research here and if anyone in the medical community is going to find out what I have seen it will be her. Dr. Jessica Eccles has a psychiatry background and which helps her use the psychiatric comorbidities of hEDS to find associations that would not be clear if only using standard diagnostic criteria. Her claims are not as strong as mine but she does have to work within the medical community and can only push so hard, even still her claims are pretty strong and she does provide the evidence for them. She is getting published. I expect her claims to get stronger once she is able to collect more evidence. She is currently using Generalized Joint Hypermobility https://bmjpublichealth.bmj.com/content/2/1/e000478 but notes that the distinction between GJM, HSD, and hEDS is rather blurry and I think in time, when she has more evidence, she will start to challenge the standard diagnostic criteria more forcefully.
As for my own research, I did an unofficial study on the patients of a Long Covid clinic and found that 30% have hEDS/HSD which would be statically impossible if hEDS/HSD was at 1/500 and could only happen if the true incidence rate was closer to 1/50. It's reasonable to expect some sampling criteria basis in sampling from a clinic and not the general population but in testing for such bias I was only able to find a weak effect and nothing anywhere near close to the measured 10x.
So yes, I do believe that the hEDS connective tissue disorder is the unifying diagnosis responsible for huge number of undiagnosed conditions. Clearly not all but possibly the majority and at least the plurality. I think it's the most under diagnosed condition by absolute numbers and work should be focused on correcting that until it is at least the second most under diagnosed condition.
I definitely sympathize with you on doctors generally being unhelpful and uncurious.
I know someone who went through a similar experience with H. pylori.
Surely the correct response for noninvasive tests is to run the test, and raise the threshold for intervention?
https://my.clevelandclinic.org/health/diagnostics/12360-hydr...
Software developers often have this unrealistic fantasy about how things ought to work in medicine and biology. They reality is far messier.
Also yes, you're right about having good estimates for medical tests.
Mainly I take issue with your claim that "Running most tests twice won't necessarily give you any useful additional information." As long as it is directionally associated with the thing you're trying to test for (i.e. it has any medical value at all), then running it twice absolutely should give you additional information. "Not necessarily" I guess is true, but again, probability gives us the tools to reason about situations like this even if we can't estimate population parameters reliably.
Never heard of it until now.
Don't recall it from memory or find it on a quick Google search.
Posisble I'm wrong though.