8 ms·

I'm always struck by stories of how difficult it is to get a condition diagnosed. Endometriosis is a great example as the OP author notes. The New York Times u

I'm always struck by stories of how difficult it is to get a condition diagnosed. Endometriosis is a great example as the OP author notes. The New York Times used to run a series of medical case studies in their magazine, and over and over again the story was essentially that the patient sought care from primary care and specialists, without success, and were generally miserable, until a miraculous event happened, like a friend's aunt knowing someone at Johns Hopkins, and that doctor having the time to think about it. The problem was incredibly evident for female patients. I don't know whether this is a result of doctors being burned out by the system that they work in, a certain doctorial arrogance that diminishes their listening skills, over-reliance on heuristic diagnoses, some kind of ignorance of womens' conditions, or even a kind of medical misogyny. But it pushes people pretty quickly towards Dr Google and sometimes, sadly, into quackery, and that can't be a good thing.

scythe 1y ago
Popular understanding, particularly in the United States, is a little behind the scientific opinion on the subject. Most women I've talked to are still under the impression that endometriosis can only be diagnosed by laparoscopy. But there have been improvements in the use of contrast MRI for diagnosis, and as of 2022 the guidelines in Europe recommend MRI as the first option. https://pmc.ncbi.nlm.nih.gov/articles/PMC9732073/ https://pmc.ncbi.nlm.nih.gov/articles/PMC9732073/ However, the protocol isn't perfect, and there is probably still room to develop better contrast agents and MR sequences. >some kind of ignorance of womens' conditions Some things are just hard. The treatments for benign prostatic hyperplasia suck too. There is no effective reversible pharmaceutical male birth control. Et cetera.
placardloop 1y ago
My significant other is going through this situation, and in my experience it seems as though most doctors just simply don’t care to actually find a diagnosis (or at least, don’t have the time or motivation to care), combined with a hefty dose of “that’s not my job”. My SO has been to specialist after specialist who spends a grand total of 2 minutes listening to the symptoms, followed by “well let’s do some blood tests and see what they say” (ignoring that the last 5 doctors already did blood tests). And then when the blood tests come back with nothing obvious, the doctor just throws up their hands and says “well I don’t know what to do, you should go see <other specialist>”. The reason the “family member or friend who knows someone who can recommend a doctor” seems to work well, in my experience, is because that doctor then has some motivation to actually care, as the patient is connected to someone they already know and care about. Our medical system financially incentivizes doctors to see as many patients as possible, but doesn’t financially incentivize actually making them better. For that, the system just hopes that doctors will care, without giving them the room to do so.
- Henchman21 1y ago
  What our "system" seems to actually incentivize is keeping people chronically ill so that they're forced to continually pay for their non-treatment. It's hard not to be incredibly cynical in the face of things like this. Way more than once have I thought "this is a cruel and unusual punishment" -- wait aren't those prohibited?? Oh right we get around that by making cruelty usual.
  - liquidise 1y ago
    I feel this is more a societal failing than a medical one. Most people don’t want to take better care of themselves: eating better, portion control, more regular exercise, etc. Too hard. People want a pill to solve the ailments they have.
    - kjkjadksj 1y ago
      Exactly why weight loss pills are a multibillion dollar industry today.
      - nradov 1y ago
        Technically those are mostly weight loss injections now. The pills don't work nearly as well.
  - tekla 1y ago
    People want medication to solve their problems, not actually try and solve things without paying money for it
    - const_cast 1y ago
      You can't solve your health issues without paying money. If you have high cholesterol and you decide to make lifestyle changes, you still have to go to the cardiologist. Because you have absolutely no idea if you actually lowered your cholesterol. A big fallacy is people thinking they know if they are healthy or they know about their bodies. You don't. Even if you live a very healthy lifestyle, you still have to go to the doctor. You still need screening.
Spooky23 1y ago
Frontline medicine is all about “just do x” hacks to try to move quicker. We turn people into a fault tree, and enforce that with EMR and audit/review you create a bias to focus on the 80/20 approach. Essentially turning medicine into a helpdesk. A family member ran into this with a brain tumor, which for a patient presenting with a headache is a 1% likelihood. Slightly elevated blood pressure was the focus in that case. Persistence and a subtle symptom changed triggered the CT scan that ultimately led to the diagnosis about 8 weeks later. Unfortunately with melanoma, 8 weeks is a long time. Ultimately there’s no right answer. 99% of people with headaches have high blood pressure or other “normal” causes. Sending 1,000 people to CT to identify 5 tumors will cause 50 other complications. Think of doctors like a helpdesk in a big company. Open a ticket, but work your network to get someone who isn’t dumb to think about it. If you’re too poor or don’t have friends and advocates, your outcome will be no mas.
- margalabargala 1y ago
  > Sending 1,000 people to CT to identify 5 tumors will cause 50 other complications. This is something frequently missing from discussions like this. Something that has a fairly small per-patient risk like a CT scan, causes far more pain than reduced missed diagnoses would solve if applied across the whole population.
  - Spooky23 1y ago
    Not only that, but you have red herrings. Going down the rabbit hole chasing random anomalies doesn’t solve the patients problem either!
- NooneAtAll3 1y ago
  what complications are there from CT scan? asking as someone that had it
  - macNchz 1y ago
    Not a doctor, but to my understanding there are two main issues with CT scans in this context: the radiation from the scan itself, and the fact that it can lead to "incidental findings" which then might cause a cascade of other, more invasive tests with risks of their own. CT scans are super valuable for all sorts of things, and the radiation dose/risk for an individual is small, but at a societal level using them freely as a "might as well" kind of test results in a lot of excess radiation exposure. This recent research suggests up to 5% of cancer diagnoses each year could be from CT scan radiation: https://www.ucsf.edu/news/2025/04/429791/popular-ct-scans-could-account-5-all-cancer-cases-year https://www.ucsf.edu/news/2025/04/429791/popular-ct-scans-co... The "incidental findings" side is an interesting dilemma: CT scans often reveal other stuff beyond what they were initially ordered for, but which can't be identified solely by the CT scan itself. So, if something looks a little weird on the CT scan it creates an imperative to figure out what it is, so there are additional tests, each of which carries its own risks and also consumes limited resources that might otherwise have been used for people with more definitively concerning findings. https://en.wikipedia.org/wiki/Incidental_imaging_finding https://en.wikipedia.org/wiki/Incidental_imaging_finding
smeej 1y ago
I just had an "on this day" reminder pop up that told me I've been searching for the answers to two relatively common problems for twelve years with no progress, unless you count ruling out the same damn primary suspects over and over and over. I get migraines at the same time of month every month, and I have chronic pain in my heel and 2nd metatarsal--and no, it's not plantar fasciitis. Every couple of years, I get renewed energy to try the search again. It lasts for a year or two before I run out of steam, give up, and decide to live with it, because I'm easily 6 figures into trying to be able to walk without pain and not be laid out with a headache every month. 100% of doctors started with telling me the problem was my weight. I lost 50 lbs and all my symptoms got worse, so they pivoted to telling me it's psychogenic. All of them. But I've been through all the recommended types of psych treatment too, and a few experimental ones besides. In point of fact, I cannot convince anybody who might know to care enough to find out, and it seems unlikely I ever will. There doesn't seem to be any good reason I should be stuck with these pains, but there are only so many times I'm willing to try the same things, expecting different results, because this doctor thinks all the other ones must have been too stupid to rule out the obvious causes.
- wbl 1y ago
  Migraine drugs have improved incredibly in the last few years. As a fellow sufferer I recommend you ask about them: given the same time of month you can likely preempt them entirely. I hope you get some answers!
  - smeej 1y ago
    Do you have any specific recommendations? I keep asking my docs for any new options, but it's not getting me anywhere.
    - wbl 1y ago
      https://en.m.wikipedia.org/wiki/Calcitonin_gene-related_peptide_receptor_antagonist https://en.m.wikipedia.org/wiki/Calcitonin_gene-related_pept... Biologic and small molecule options
- 1y ago
GrantMoyer 1y ago
I think it's probably just really hard to diagnose uncommon diseases in people (although endometriosis in particular may be fairly common). I have trouble diagnosing some bugs in software at my job; I imagine it's much harder to diagnose issues in a human body.
ozim 1y ago
"Now it is a strange thing, but things that are good to have and days that are good to spend are soon told about, and not much to listen to; while things that are uncomfortable, palpitating, and even gruesome, may make a good tale, and take a deal of telling anyway." “Happy families are all alike; every unhappy family is unhappy in its own way". To sum it up, not much to write about ones that went to primary care and were handled properly.
giantg2 1y ago
"I don't know whether this is a result of..." The cause is pretty easy. Patients aren't treated like mysteries, they're treated like BAU Jira tickets - just get it done so you're on to the next one. The system is built to handle the 90%. If you fall into that other 10%, it won't work well for you. If you have provider companies and insurances pressing you to hit some metric, that's what you have to do. If you are concerned about malpractice, then you have to just read from the Epic system. No surprise we're in this situation.
- KaoruAoiShiho 1y ago
  Yep this is something that only AI can solve. Same situation applies to education, sales, HR. Human powered bureaucracies and systems suck.
  - dayofthedaleks 1y ago
    Any AI will most certainly reflect the biases of the bureaucracies responsible for their creation.
    - KaoruAoiShiho 1y ago
      Nah AI can easily be programmed to be much more patient and investigate edge cases and figure out personalized solutions thoroughly and provide bespoke service. This problem would be solved, though of course there are other issues with biases of the bureaucracies.
      - hluska 1y ago
        If you can do that easily, you will have no shortage of investors. But it’s not easy - getting the data alone is a huge problem.
        deleted 1y ago
        [deleted]
        1y ago
matsemann 1y ago
I wonder how much is due to lack of feedback? I went somewhere due to knee pain. After some time got a diagnosis and some exercises. Didn't feel it made sense, so I went somewhere else and got a better (the correct) diagnosis and got my issue fixed. To the first PT, the only signal they have is that I didn't come back. If their assumption is it was because I got cured, they will probably give the same wrong diagnosis the next time someone shows up with the same symptoms.
refurb 1y ago
I know a few doctors and the vast, vast majority of patients have what you thought they had when they walked in the door. Boring, could-have-guessed illnesses (or maybe not). 99 times out a 100, if the doctor thinks it's something else, it's not. So when someone comes in who doesn't fit that mold, they get shuttled around to a bunch of doctors until it gets bad enough someone is forced to think outside the box.
gosub100 1y ago
> The problem was incredibly evident for female patients. Did the NYT evenly select male and female patients? Knowing about their political leanings, I highly doubt it.
BrandoElFollito 1y ago
It was the case when my wife was diagnosed with MS 17 years ago. There was no "test for MS", just a statistical answer "it looks like this is MS because of some symptoms, some non-conclusive reults and how the MRI look like". We just took it for good money ans she is treated since with reasonable results. But it may be something else. I wonder if there are better tests today.
deleted 1y ago
[deleted]
swat535 1y ago
I was suffering from Secondary Hypogonadism despite my Testosterone levels showing "normal" for years and suffering from all the symptoms: brain fog, fatigue and no libido. I spent over a year going through the Canadian healthcare system, seeing different doctors. Most either brushed me off or implied it was all in my head and normal exercise would fix it (I am fairly active and have a healthy BMI). Even the few who took me seriously refused to run further tests or offer any treatment. Eventually, I gave up and saw a private urologist. He looked at my results, immediately ordered more tests, and it was obvious from the new data what was going on. He prescribed HCG, and within a month I felt like a different person. Symptoms gone, T levels back in range. Really wish more doctors took the time to actually listen, especially when a patient clearly isn’t doing well despite "normal" labs.
- dzink 1y ago
  The major difference between private and public health care providers. Public providers are often burned out to a crisp and have little empathy or energy left. Private providers are compensated for each task and the incentive system and work ethic is dramatically different.
- CjHuber 1y ago
  I'd be interested in what the problem was. Was it too high SHBG and thus too low free testosterone? I'd be shocked if any doctor couldn't recognize that.
- throaway2501 1y ago
  i have dupuytrens (aggressive and at a young age), and my canadian doctors didn’t know that there was a radiation oncologist downtown doing rad therapy for it. waited 4 months and found out on google. how is it defensible that a doctor doesn’t know that someone in the same system as them offers treatments?
- 0x1ceb00da 1y ago
  > despite my Testosterone levels showing "normal" for years > T levels back in range. Were the T levels normal or not?
bane 1y ago
Every woman I know who's been properly diagnosed with endo had to self-diagnose first, and then advocate to be tested. Not a single one was properly diagnosed by their doctor first. I'm not sure what the reason is, even women who go to doctors who specialize in endo seem to miss it unless the patient self-identifies. The path to figuring it can be long and sometimes improbably. For example, somebody I know was watching a youtube channel they like, and one of the creators put out a side-video about a short informational cartoon they made about their own journey discovering they had endometriosis -- which also echoed this same diagnostic pattern. My friend saw something in the cartoon that seemed familiar, decided to go get a biopsy, and voila - a lifetime of pain was finally answered. She was in her late 40s, and decided to just go get surgery and now a few years and a hysterectomy later lives pain free.
bookofjoe 1y ago
>Opinions expressed are my own, and not those of any employer, whether past or present. For lulz you could add "or future"
beagle3 1y ago
It’s also hubris and overconfidence. My child had a disease that’s very rare and hard to diagnose. A week at Johns Hopkins with hundreds of thousands of dollars of tests found nothing. The doctors sent us home with a “it’s just a virus, it’ll probably go away in a few weeks”. Some 72 hours later, armed with google, Wikipedia, the rest of the internet, and coffee (with very little sleep). I figured it out. But when I called Hopkins they said “you are wrong, can’t be that. Stop using the internet, you have no idea what you are reading and you are only scaring yourself”. 30-or-so specialists from a variety of top US hospitals kept saying the same thing (with the addition: “if Hopkins says you are wrong, you are wrong”. But then, we saw a specialist in a world top-10 hospital outside the US, who immediately agreed with my diagnosis. Treatment started the following week (only 3 months lost) and the condition started to resolve. I kept in touch with the doctors I had seen before. They didn’t care. Some thought it was still the wrong diagnosis. Until a year later, near complete remission - and pathology of a resection - confirmed it 100% Modern medicine is part science, part craft, part cult. You tend to meet the cult aspect more often with rare or hard-to-diagnose diseases.
- theshackleford 1y ago
  > But when I called Hopkins they said “you are wrong, can’t be that. Stop using the internet, you have no idea what you are reading and you are only scaring yourself”. I am sorry to hear that. This is the path once upon a time I would of taken. Just assuming it was bad to be Dr Google as I'd learned from a young age. Let the doctors do their job and all that. Now I am the complete opposite. My neurosurgeon HEAVILY pushed me to start "googling" and "reading whatever you can" and straight up told me not to trust general practitioners as the vast majority of them are woefully ill equipped to deal with anything I am dealing with. Thank god I took his advice, because I almost did the same thing again. For months GP's were telling me my new and expanded pain was the same old SCI injury "flaring" my CNS, and that I should just take more drugs/do more physio and literally I got asked "what do you want us to do? Take the painkillers like we do told you" Well, three specialists (and two neurosugeons later) its NOT the existing injury, its severe bilateral cervical radiculopathy from where my cervical spine is disintegrating on the layers above and below my original fusions and its not going to magically get better by throwing even more drugs at it, or moving my physio sessions from 3 times a week to 5 times a week. Once upon a time, I would never have said this, not deeming myself to know enough to possibly say it, but I have met now a lot of very useless doctors, like just outright incompetent.

scythe 1y ago

Popular understanding, particularly in the United States, is a little behind the scientific opinion on the subject. Most women I've talked to are still under the impression that endometriosis can only be diagnosed by laparoscopy. But there have been improvements in the use of contrast MRI for diagnosis, and as of 2022 the guidelines in Europe recommend MRI as the first option. https://pmc.ncbi.nlm.nih.gov/articles/PMC9732073/ https://pmc.ncbi.nlm.nih.gov/articles/PMC9732073/ However, the protocol isn't perfect, and there is probably still room to develop better contrast agents and MR sequences. >some kind of ignorance of womens' conditions Some things are just hard. The treatments for benign prostatic hyperplasia suck too. There is no effective reversible pharmaceutical male birth control. Et cetera.

placardloop 1y ago

My significant other is going through this situation, and in my experience it seems as though most doctors just simply don’t care to actually find a diagnosis (or at least, don’t have the time or motivation to care), combined with a hefty dose of “that’s not my job”. My SO has been to specialist after specialist who spends a grand total of 2 minutes listening to the symptoms, followed by “well let’s do some blood tests and see what they say” (ignoring that the last 5 doctors already did blood tests). And then when the blood tests come back with nothing obvious, the doctor just throws up their hands and says “well I don’t know what to do, you should go see <other specialist>”. The reason the “family member or friend who knows someone who can recommend a doctor” seems to work well, in my experience, is because that doctor then has some motivation to actually care, as the patient is connected to someone they already know and care about. Our medical system financially incentivizes doctors to see as many patients as possible, but doesn’t financially incentivize actually making them better. For that, the system just hopes that doctors will care, without giving them the room to do so.

Henchman21 1y ago
What our "system" seems to actually incentivize is keeping people chronically ill so that they're forced to continually pay for their non-treatment. It's hard not to be incredibly cynical in the face of things like this. Way more than once have I thought "this is a cruel and unusual punishment" -- wait aren't those prohibited?? Oh right we get around that by making cruelty usual.
- liquidise 1y ago
  I feel this is more a societal failing than a medical one. Most people don’t want to take better care of themselves: eating better, portion control, more regular exercise, etc. Too hard. People want a pill to solve the ailments they have.
  - kjkjadksj 1y ago
    Exactly why weight loss pills are a multibillion dollar industry today.
    - nradov 1y ago
      Technically those are mostly weight loss injections now. The pills don't work nearly as well.
- tekla 1y ago
  People want medication to solve their problems, not actually try and solve things without paying money for it
  - const_cast 1y ago
    You can't solve your health issues without paying money. If you have high cholesterol and you decide to make lifestyle changes, you still have to go to the cardiologist. Because you have absolutely no idea if you actually lowered your cholesterol. A big fallacy is people thinking they know if they are healthy or they know about their bodies. You don't. Even if you live a very healthy lifestyle, you still have to go to the doctor. You still need screening.

Spooky23 1y ago

Frontline medicine is all about “just do x” hacks to try to move quicker. We turn people into a fault tree, and enforce that with EMR and audit/review you create a bias to focus on the 80/20 approach. Essentially turning medicine into a helpdesk. A family member ran into this with a brain tumor, which for a patient presenting with a headache is a 1% likelihood. Slightly elevated blood pressure was the focus in that case. Persistence and a subtle symptom changed triggered the CT scan that ultimately led to the diagnosis about 8 weeks later. Unfortunately with melanoma, 8 weeks is a long time. Ultimately there’s no right answer. 99% of people with headaches have high blood pressure or other “normal” causes. Sending 1,000 people to CT to identify 5 tumors will cause 50 other complications. Think of doctors like a helpdesk in a big company. Open a ticket, but work your network to get someone who isn’t dumb to think about it. If you’re too poor or don’t have friends and advocates, your outcome will be no mas.

margalabargala 1y ago
> Sending 1,000 people to CT to identify 5 tumors will cause 50 other complications. This is something frequently missing from discussions like this. Something that has a fairly small per-patient risk like a CT scan, causes far more pain than reduced missed diagnoses would solve if applied across the whole population.
- Spooky23 1y ago
  Not only that, but you have red herrings. Going down the rabbit hole chasing random anomalies doesn’t solve the patients problem either!
NooneAtAll3 1y ago
what complications are there from CT scan? asking as someone that had it
- macNchz 1y ago
  Not a doctor, but to my understanding there are two main issues with CT scans in this context: the radiation from the scan itself, and the fact that it can lead to "incidental findings" which then might cause a cascade of other, more invasive tests with risks of their own. CT scans are super valuable for all sorts of things, and the radiation dose/risk for an individual is small, but at a societal level using them freely as a "might as well" kind of test results in a lot of excess radiation exposure. This recent research suggests up to 5% of cancer diagnoses each year could be from CT scan radiation: https://www.ucsf.edu/news/2025/04/429791/popular-ct-scans-could-account-5-all-cancer-cases-year https://www.ucsf.edu/news/2025/04/429791/popular-ct-scans-co... The "incidental findings" side is an interesting dilemma: CT scans often reveal other stuff beyond what they were initially ordered for, but which can't be identified solely by the CT scan itself. So, if something looks a little weird on the CT scan it creates an imperative to figure out what it is, so there are additional tests, each of which carries its own risks and also consumes limited resources that might otherwise have been used for people with more definitively concerning findings. https://en.wikipedia.org/wiki/Incidental_imaging_finding https://en.wikipedia.org/wiki/Incidental_imaging_finding

smeej 1y ago

I just had an "on this day" reminder pop up that told me I've been searching for the answers to two relatively common problems for twelve years with no progress, unless you count ruling out the same damn primary suspects over and over and over. I get migraines at the same time of month every month, and I have chronic pain in my heel and 2nd metatarsal--and no, it's not plantar fasciitis. Every couple of years, I get renewed energy to try the search again. It lasts for a year or two before I run out of steam, give up, and decide to live with it, because I'm easily 6 figures into trying to be able to walk without pain and not be laid out with a headache every month. 100% of doctors started with telling me the problem was my weight. I lost 50 lbs and all my symptoms got worse, so they pivoted to telling me it's psychogenic. All of them. But I've been through all the recommended types of psych treatment too, and a few experimental ones besides. In point of fact, I cannot convince anybody who might know to care enough to find out, and it seems unlikely I ever will. There doesn't seem to be any good reason I should be stuck with these pains, but there are only so many times I'm willing to try the same things, expecting different results, because this doctor thinks all the other ones must have been too stupid to rule out the obvious causes.

wbl 1y ago
Migraine drugs have improved incredibly in the last few years. As a fellow sufferer I recommend you ask about them: given the same time of month you can likely preempt them entirely. I hope you get some answers!
- smeej 1y ago
  Do you have any specific recommendations? I keep asking my docs for any new options, but it's not getting me anywhere.
  - wbl 1y ago
    https://en.m.wikipedia.org/wiki/Calcitonin_gene-related_peptide_receptor_antagonist https://en.m.wikipedia.org/wiki/Calcitonin_gene-related_pept... Biologic and small molecule options
1y ago

GrantMoyer 1y ago

I think it's probably just really hard to diagnose uncommon diseases in people (although endometriosis in particular may be fairly common). I have trouble diagnosing some bugs in software at my job; I imagine it's much harder to diagnose issues in a human body.

ozim 1y ago

"Now it is a strange thing, but things that are good to have and days that are good to spend are soon told about, and not much to listen to; while things that are uncomfortable, palpitating, and even gruesome, may make a good tale, and take a deal of telling anyway." “Happy families are all alike; every unhappy family is unhappy in its own way". To sum it up, not much to write about ones that went to primary care and were handled properly.

giantg2 1y ago

"I don't know whether this is a result of..." The cause is pretty easy. Patients aren't treated like mysteries, they're treated like BAU Jira tickets - just get it done so you're on to the next one. The system is built to handle the 90%. If you fall into that other 10%, it won't work well for you. If you have provider companies and insurances pressing you to hit some metric, that's what you have to do. If you are concerned about malpractice, then you have to just read from the Epic system. No surprise we're in this situation.

KaoruAoiShiho 1y ago
Yep this is something that only AI can solve. Same situation applies to education, sales, HR. Human powered bureaucracies and systems suck.
- dayofthedaleks 1y ago
  Any AI will most certainly reflect the biases of the bureaucracies responsible for their creation.
  - KaoruAoiShiho 1y ago
    Nah AI can easily be programmed to be much more patient and investigate edge cases and figure out personalized solutions thoroughly and provide bespoke service. This problem would be solved, though of course there are other issues with biases of the bureaucracies.
    - hluska 1y ago
      If you can do that easily, you will have no shortage of investors. But it’s not easy - getting the data alone is a huge problem.
      - deleted 1y ago
        [deleted]
      - 1y ago

matsemann 1y ago

I wonder how much is due to lack of feedback? I went somewhere due to knee pain. After some time got a diagnosis and some exercises. Didn't feel it made sense, so I went somewhere else and got a better (the correct) diagnosis and got my issue fixed. To the first PT, the only signal they have is that I didn't come back. If their assumption is it was because I got cured, they will probably give the same wrong diagnosis the next time someone shows up with the same symptoms.

refurb 1y ago

I know a few doctors and the vast, vast majority of patients have what you thought they had when they walked in the door. Boring, could-have-guessed illnesses (or maybe not). 99 times out a 100, if the doctor thinks it's something else, it's not. So when someone comes in who doesn't fit that mold, they get shuttled around to a bunch of doctors until it gets bad enough someone is forced to think outside the box.

gosub100 1y ago

> The problem was incredibly evident for female patients. Did the NYT evenly select male and female patients? Knowing about their political leanings, I highly doubt it.

BrandoElFollito 1y ago

It was the case when my wife was diagnosed with MS 17 years ago. There was no "test for MS", just a statistical answer "it looks like this is MS because of some symptoms, some non-conclusive reults and how the MRI look like". We just took it for good money ans she is treated since with reasonable results. But it may be something else. I wonder if there are better tests today.

deleted 1y ago

[deleted]

swat535 1y ago

I was suffering from Secondary Hypogonadism despite my Testosterone levels showing "normal" for years and suffering from all the symptoms: brain fog, fatigue and no libido. I spent over a year going through the Canadian healthcare system, seeing different doctors. Most either brushed me off or implied it was all in my head and normal exercise would fix it (I am fairly active and have a healthy BMI). Even the few who took me seriously refused to run further tests or offer any treatment. Eventually, I gave up and saw a private urologist. He looked at my results, immediately ordered more tests, and it was obvious from the new data what was going on. He prescribed HCG, and within a month I felt like a different person. Symptoms gone, T levels back in range. Really wish more doctors took the time to actually listen, especially when a patient clearly isn’t doing well despite "normal" labs.

dzink 1y ago
The major difference between private and public health care providers. Public providers are often burned out to a crisp and have little empathy or energy left. Private providers are compensated for each task and the incentive system and work ethic is dramatically different.
CjHuber 1y ago
I'd be interested in what the problem was. Was it too high SHBG and thus too low free testosterone? I'd be shocked if any doctor couldn't recognize that.
throaway2501 1y ago
i have dupuytrens (aggressive and at a young age), and my canadian doctors didn’t know that there was a radiation oncologist downtown doing rad therapy for it. waited 4 months and found out on google. how is it defensible that a doctor doesn’t know that someone in the same system as them offers treatments?
0x1ceb00da 1y ago
> despite my Testosterone levels showing "normal" for years > T levels back in range. Were the T levels normal or not?

bane 1y ago

Every woman I know who's been properly diagnosed with endo had to self-diagnose first, and then advocate to be tested. Not a single one was properly diagnosed by their doctor first. I'm not sure what the reason is, even women who go to doctors who specialize in endo seem to miss it unless the patient self-identifies. The path to figuring it can be long and sometimes improbably. For example, somebody I know was watching a youtube channel they like, and one of the creators put out a side-video about a short informational cartoon they made about their own journey discovering they had endometriosis -- which also echoed this same diagnostic pattern. My friend saw something in the cartoon that seemed familiar, decided to go get a biopsy, and voila - a lifetime of pain was finally answered. She was in her late 40s, and decided to just go get surgery and now a few years and a hysterectomy later lives pain free.

bookofjoe 1y ago

>Opinions expressed are my own, and not those of any employer, whether past or present. For lulz you could add "or future"

beagle3 1y ago

It’s also hubris and overconfidence. My child had a disease that’s very rare and hard to diagnose. A week at Johns Hopkins with hundreds of thousands of dollars of tests found nothing. The doctors sent us home with a “it’s just a virus, it’ll probably go away in a few weeks”. Some 72 hours later, armed with google, Wikipedia, the rest of the internet, and coffee (with very little sleep). I figured it out. But when I called Hopkins they said “you are wrong, can’t be that. Stop using the internet, you have no idea what you are reading and you are only scaring yourself”. 30-or-so specialists from a variety of top US hospitals kept saying the same thing (with the addition: “if Hopkins says you are wrong, you are wrong”. But then, we saw a specialist in a world top-10 hospital outside the US, who immediately agreed with my diagnosis. Treatment started the following week (only 3 months lost) and the condition started to resolve. I kept in touch with the doctors I had seen before. They didn’t care. Some thought it was still the wrong diagnosis. Until a year later, near complete remission - and pathology of a resection - confirmed it 100% Modern medicine is part science, part craft, part cult. You tend to meet the cult aspect more often with rare or hard-to-diagnose diseases.

theshackleford 1y ago
> But when I called Hopkins they said “you are wrong, can’t be that. Stop using the internet, you have no idea what you are reading and you are only scaring yourself”. I am sorry to hear that. This is the path once upon a time I would of taken. Just assuming it was bad to be Dr Google as I'd learned from a young age. Let the doctors do their job and all that. Now I am the complete opposite. My neurosurgeon HEAVILY pushed me to start "googling" and "reading whatever you can" and straight up told me not to trust general practitioners as the vast majority of them are woefully ill equipped to deal with anything I am dealing with. Thank god I took his advice, because I almost did the same thing again. For months GP's were telling me my new and expanded pain was the same old SCI injury "flaring" my CNS, and that I should just take more drugs/do more physio and literally I got asked "what do you want us to do? Take the painkillers like we do told you" Well, three specialists (and two neurosugeons later) its NOT the existing injury, its severe bilateral cervical radiculopathy from where my cervical spine is disintegrating on the layers above and below my original fusions and its not going to magically get better by throwing even more drugs at it, or moving my physio sessions from 3 times a week to 5 times a week. Once upon a time, I would never have said this, not deeming myself to know enough to possibly say it, but I have met now a lot of very useless doctors, like just outright incompetent.