6 ms·

I was diagnosed with RA a few years ago when my left knee kept swelling to the size of a grapefruit. It was incredibly painful; I have a very high pain toleranc

by kodah 3y ago

I was diagnosed with RA a few years ago when my left knee kept swelling to the size of a grapefruit. It was incredibly painful; I have a very high pain tolerance and it put me in tears and made me bed ridden or on crutches for multiple days at a time. Doctors were unable to find anything in the fluid of my knee and the only thing that seemed to work was corticosteroids. Prior to that I was given the diagnosis of pseudo-gout. I took methotrexate in my twenties and thirties for years, my hair fell out, and I couldn't drink. When I moved I went to reup my prescription at a Rheumatologist who ran a research clinic and as she went over my paperwork she looked in shock as she read through it and asked me, "Have you actually ever had site testing for RA or did they just look for markers?" Turns out, all they'd ever looked for was markers, tried methotrexate, and my symptoms stopped. Doctors at Baylor Scott & White thought that was good enough. At the time, I was told repeatedly that we know "a lot" about RA and that I could trust the diagnosis. I was slowly weened off of methotrexate and we waited to see if I would have a flare-up. The flare-up never came and she told me not to come back after telling me more or less what you've said here. I also learned it's incredibly difficult to sue a doctor for a misdiagnosis, even if they put you on a drug like methotrexate and took years of normalcy from your life.

belinder 3y ago
> I also learned it's incredibly difficult to sue a doctor for a misdiagnosis, even if they put you on a drug like methotrexate and took years of normalcy from your life This seems so frustrating to me. A big factor in the high healthcare prices in the US is that doctors need to pay heavy premiums for their malpractice insurance. If they can't get sued anyway then why are we all paying them to pay for the insurance?
- Wowfunhappy 3y ago
  Obviously, because they can get sued, just not for a misdiagnosis in most cases. A surgeon who removed the wrong organ, for example, is liable to get sued.
peanutz454 3y ago
I am sorry if this is insensitive, but thank God it is difficult to sue a doctor for misdiagnosis. If it were easy, there would be hardly any doctors in the world. Also, maybe I come from a different position but I get a second consult for just about any non-minor ailment I have ever had. Instead of suing doctors, "get second opinion" should be the thing! Every doctor tries their best, its years of toil and labor, and they can make mistakes. Please do not leave such important decision in the hand of one person under the assumption that they are an expert. I understand if you do not have money or time, but the consequence of a misdiagnosis are going to hurt you.
- bobbylarrybobby 3y ago
  At the very least, if you get a second opinion that's different from the first, and it turns out to be the correct one, you should be able to get your money back from the first doctor.
  - peanutz454 3y ago
    I am not claiming to be all aware on the big picture, but based on my personal experience till now as an Australian, an even better solution is free Medicare.
    - freedomben 3y ago
      under the free medicare are you able to go see a different doc for the same thing just to get a second opinion? Is it much hassle/paperwork to get approved?
      - pgreenwood 3y ago
        You just pick a doctor and make an appointment. What is this approval you speak of ?
      - lmpdev 3y ago
        Yes - no more hassle than the first appointment It's not "free" (unless bulk-billed), depends on what specialist and what type of appointment is involved but will range from $20-100 You can go for as many as you like
jeffparsons 3y ago
I would argue that "professional judgement" should be taken out of the equation as much as possible. What would we lose by requiring any prescribed intervention to go through a rigorously-defined flowchart/checklist? A lot of doctors think they know better than the consensus best practice. They're almost universally wrong. Off-label prescription? Mostly horse crap, unless it's part of a serious clinical trial. Unfortunately, it would be damn near impossible to get most doctors to give up any of their powers of discretion. It's all too tied up with the prestige of the role, so anything that challenges it is seen as a personal attack. For example, see how doctors in general react to pretty much any technology that automates part of their job, like reading an ECG. You can prove that the machine does a better job than the human, and they'll still reject it.
- code_biologist 3y ago
  This “flow chart” can exist now on the the back of well prompted large language models. Not that there isn’t potential for huge headaches for all parties (hallucination around medical topics will be really dangerous) but doctors should be prepared for far more sophisticated self diagnosis coming their way. I think the safest use might just be for lay users to get a third opinion and sanity check doctors.
- bigfudge 3y ago
  I think someone more knowledgeable than me should reply to this, but my understanding is that most medicine is still too complex, with too little data to reliably make machine judgement. We don’t have the training data. The comment is also uneccessarily confrontational. There are plenty of areas in medicine where checklist and sops have been widely adopted.
  - jeffparsons 3y ago
    > [...] my understanding is that most medicine is still too complex, with too little data to reliably make machine judgement. Indeed! I should have been clearer: I'm not suggesting any kind of AI / ML stuff — rather, only that where there is an established and uncontroversial best practice process for, e.g., diagnosing and treating X (which there often is), then I would hope for there to be a requirement to make a record of the path a doctor took to the conclusion, including a record any deviations like not ordering some standard test that most doctors would before starting a patient on Y. It could literally be a printed flowchart with check boxes on it and room for comments. The goal is to make the cowboys out there a little more accountable (incentivise doing things by the book), and to stop treating vague notions of "professional judgement" (a common protest against doing things by the book, I hear) as sufficient reason for ignoring the consensus best practice or simply forgetting important steps. > The comment is also uneccessarily confrontational. Fair call. I suppose ranting and raving doesn't really help anything. But I sincerely believe that a significant part of the problem is the defensiveness that tends to arise when a person is told (or it is implied): you are fallible. This tool will help to catch your mistakes, and make you more effective. I'm sure this happens in every industry, and I see working with that as 90÷ of the challenge. > There are plenty of areas in medicine where checklist and sops have been widely adopted. Yep, I agree wholeheartedly. And it saves lives. Hospitals in particular have made huge improvements to patient care/survival in this way, and continue to do so every year with new initiatives. I just think there are still a lot of, uh, exciting opportunities for future excellence. :)
lelanthran 3y ago
Do you have any idea what that was, or what helped? I ask because my sister is diagnosed with RA, and is on methotrexate, with her hair falling out. I read your comment with literally bated breath hoping there was a new diagnosis or treatment at the bottom so we could try it.
- kodah 3y ago
  After getting off methotrexate I never had that inflammation occur again. The only thing that changed is I stopped taking some B vitamins I'd been taking prior to the diagnosis. RA can be tested for by doing a synovial biopsy, if she hasn't had one I'd suggest asking her doctor about it. If she has and it came back abnormal she has RA or gout. The synovial biopsy is what I never got, they diagnosed me on symptoms alone.
- josefresco 3y ago
  > I ask because my sister is diagnosed with RA, and is on methotrexate, with her hair falling out. I also take methotrexate for my RA - does she take folic acid?
  - kodah 3y ago
    My hair fell out while taking a folic acid supplement. I don't think it's guaranteed to protect your hair, it just works on a lot of folks.
moremetadata 3y ago
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by kodah 3y ago

belinder 3y ago

> I also learned it's incredibly difficult to sue a doctor for a misdiagnosis, even if they put you on a drug like methotrexate and took years of normalcy from your life This seems so frustrating to me. A big factor in the high healthcare prices in the US is that doctors need to pay heavy premiums for their malpractice insurance. If they can't get sued anyway then why are we all paying them to pay for the insurance?

Wowfunhappy 3y ago
Obviously, because they can get sued, just not for a misdiagnosis in most cases. A surgeon who removed the wrong organ, for example, is liable to get sued.

peanutz454 3y ago

I am sorry if this is insensitive, but thank God it is difficult to sue a doctor for misdiagnosis. If it were easy, there would be hardly any doctors in the world. Also, maybe I come from a different position but I get a second consult for just about any non-minor ailment I have ever had. Instead of suing doctors, "get second opinion" should be the thing! Every doctor tries their best, its years of toil and labor, and they can make mistakes. Please do not leave such important decision in the hand of one person under the assumption that they are an expert. I understand if you do not have money or time, but the consequence of a misdiagnosis are going to hurt you.

bobbylarrybobby 3y ago
At the very least, if you get a second opinion that's different from the first, and it turns out to be the correct one, you should be able to get your money back from the first doctor.
- peanutz454 3y ago
  I am not claiming to be all aware on the big picture, but based on my personal experience till now as an Australian, an even better solution is free Medicare.
  - freedomben 3y ago
    under the free medicare are you able to go see a different doc for the same thing just to get a second opinion? Is it much hassle/paperwork to get approved?
    - pgreenwood 3y ago
      You just pick a doctor and make an appointment. What is this approval you speak of ?
    - lmpdev 3y ago
      Yes - no more hassle than the first appointment It's not "free" (unless bulk-billed), depends on what specialist and what type of appointment is involved but will range from $20-100 You can go for as many as you like

jeffparsons 3y ago

I would argue that "professional judgement" should be taken out of the equation as much as possible. What would we lose by requiring any prescribed intervention to go through a rigorously-defined flowchart/checklist? A lot of doctors think they know better than the consensus best practice. They're almost universally wrong. Off-label prescription? Mostly horse crap, unless it's part of a serious clinical trial. Unfortunately, it would be damn near impossible to get most doctors to give up any of their powers of discretion. It's all too tied up with the prestige of the role, so anything that challenges it is seen as a personal attack. For example, see how doctors in general react to pretty much any technology that automates part of their job, like reading an ECG. You can prove that the machine does a better job than the human, and they'll still reject it.

code_biologist 3y ago
This “flow chart” can exist now on the the back of well prompted large language models. Not that there isn’t potential for huge headaches for all parties (hallucination around medical topics will be really dangerous) but doctors should be prepared for far more sophisticated self diagnosis coming their way. I think the safest use might just be for lay users to get a third opinion and sanity check doctors.
bigfudge 3y ago
I think someone more knowledgeable than me should reply to this, but my understanding is that most medicine is still too complex, with too little data to reliably make machine judgement. We don’t have the training data. The comment is also uneccessarily confrontational. There are plenty of areas in medicine where checklist and sops have been widely adopted.
- jeffparsons 3y ago
  > [...] my understanding is that most medicine is still too complex, with too little data to reliably make machine judgement. Indeed! I should have been clearer: I'm not suggesting any kind of AI / ML stuff — rather, only that where there is an established and uncontroversial best practice process for, e.g., diagnosing and treating X (which there often is), then I would hope for there to be a requirement to make a record of the path a doctor took to the conclusion, including a record any deviations like not ordering some standard test that most doctors would before starting a patient on Y. It could literally be a printed flowchart with check boxes on it and room for comments. The goal is to make the cowboys out there a little more accountable (incentivise doing things by the book), and to stop treating vague notions of "professional judgement" (a common protest against doing things by the book, I hear) as sufficient reason for ignoring the consensus best practice or simply forgetting important steps. > The comment is also uneccessarily confrontational. Fair call. I suppose ranting and raving doesn't really help anything. But I sincerely believe that a significant part of the problem is the defensiveness that tends to arise when a person is told (or it is implied): you are fallible. This tool will help to catch your mistakes, and make you more effective. I'm sure this happens in every industry, and I see working with that as 90÷ of the challenge. > There are plenty of areas in medicine where checklist and sops have been widely adopted. Yep, I agree wholeheartedly. And it saves lives. Hospitals in particular have made huge improvements to patient care/survival in this way, and continue to do so every year with new initiatives. I just think there are still a lot of, uh, exciting opportunities for future excellence. :)

lelanthran 3y ago

Do you have any idea what that was, or what helped? I ask because my sister is diagnosed with RA, and is on methotrexate, with her hair falling out. I read your comment with literally bated breath hoping there was a new diagnosis or treatment at the bottom so we could try it.

kodah 3y ago
After getting off methotrexate I never had that inflammation occur again. The only thing that changed is I stopped taking some B vitamins I'd been taking prior to the diagnosis. RA can be tested for by doing a synovial biopsy, if she hasn't had one I'd suggest asking her doctor about it. If she has and it came back abnormal she has RA or gout. The synovial biopsy is what I never got, they diagnosed me on symptoms alone.
josefresco 3y ago
> I ask because my sister is diagnosed with RA, and is on methotrexate, with her hair falling out. I also take methotrexate for my RA - does she take folic acid?
- kodah 3y ago
  My hair fell out while taking a folic acid supplement. I don't think it's guaranteed to protect your hair, it just works on a lot of folks.

moremetadata 3y ago

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