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.

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.

I agree with you now. At the time I believed going to a place like BS&W got me doctors who had peers. In hindsight that was probably a big assumption.

> Every doctor tries their best,

This could not be more false. The bell curve also applies to doctors.

you're mistaking aptitude for effort.

a great doctor who phones it in because he's got Sixers tickets that evening can still get you killed.

Effort also follows a bell curve. You can have an incompetent and lazy doctor at the same time.

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.

> free Medicare

Does not exist for a growing number of Australians. No clinic in practical range of me bulk bills any more.

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?

You wouldn’t need to get “approved” to do so…

You’d go back to your regular non-specialist doctor, your GP, and ask for a new referral to a specialist, explain that you want a different one, and why… the GP would give you the referral.

You might end up seeing a “private” specialist - Medicare would pay some money toward it, but the gap, the extra bit, you pay yourself (or if you have medical insurance, your insurer pays it). The insurer doesn’t waste time checking before hand whether you are or are not “approved” - and the “gap” for seeing a specialist might be $200, not much more than that.

If you don’t want to pay any money, then you wait longer for a “public” specialist to be available. It might be the same actual specialist btw, as the public hospitals are good hospitals.

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

Sorry, its not exactly free like I described. When you are seeing experts (and when you really need second consult) you get back a small part of your money, but expert costs are high enough to deter most people from getting second opinion. But, no it is not a lot of hassle/paperwork for seeking second opinion.

I find it is about the right cost (location depending)

I've been seeing a specialist for six years under this system, and he has had to close his books for the past two years

There are genuine shortages for a lot of specialists - they personally seem very over worked to me (well paid though)

If a disease is as extreme as the OP though I'm sure the ~$400 max isn't a life altering barrier to entry to a second opinion though

You just pick a doctor and make an appointment. What is this approval you speak of ?

Yeah this. I guess we all have some story, bigger or smaller, when doctor didn't do perfect diagnosis or treatment.

Take a look form different perspective - if you do software, have you ever created a bug? Imagine if your employer wanted to vengefully sue you for every other bug you ever did - that's what many doctors are facing with various patients. Maybe you yourself are perfectly stable well balanced individual, but our of those 2000 other patients some are bipolar, schizophrenic, sociopathic etc. without proper diagnosis and treatment.

We outsiders often tend to have this image of medicine being a solved problem, when reality is so far from this.

How do you know which one is correct though?

How about if doctors were required to work for larger entities with deep pockets (e.g. HMOs, hospitals, the private partnerships backing plastic surgeries, etc), and we could easily sue those?

Or we could just cut out a step, and have those entities put a warranty on the treatments doctors working for them provide. Not satisfied with a treatment? "Return it" and get your money back!

> 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?

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.

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.

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.

> 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?

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.

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.

> [...] 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. :)

Seropositive RA is a specific but variable condition. Seronegative RA... you are quite right. It's almost easier to group by a rational treatment approach for a chronic inflammatory polyarthritis that looks like RA clinically rather than one diagnostic entity.

Here is kind of a fun prospective study that illustrates your point well: https://pubmed.ncbi.nlm.nih.gov/29998832/ . The investors assessed what patients in their centre were reclassified into 10 years after a diagnosis of seronegative RA.

"13 (13/435 [3%]) could be reclassified as seropositive or erosive RA: 4 turned seropositive (2 for ACPA and 2 for RF [> 2x reference level]) and 9 developed erosions typical for RA. " ... "Reclassification revealed 68 (16%) cases of polymyalgia rheumatica, 46 (11%) psoriatic arthritis, 45 (10%) osteoarthritis, 38 (8.7%) spondyloarthritis, 15 (3.4%) plausible reactive arthritis, 10 (2.3%) gout, 17 (3.9%) pseudogout, 6 (1.4%) paraneoplastic arthritis, 6 (1.4%) juvenile arthritis, 2 (0.5%) haemochromatosis, 3 (0.7%) ankylosing spondylitis, 2 (0.5%) giant cell arteritis, and 8 miscellaneous diagnoses. The other 140 patients (32%) could not be reclassified in any clear-cut diagnosis "

Caveat: A big limitation is we don't know how many patients were diagnosed with seropositive RA in that time frame: I'd wager it's over an order of magnitude higher. These were probably less clear cut cases.

I have chronic tendonitis in my elbows and hands. They say it's non-rheumatologic but don't know what it is. How frustrating medicine can be.

There is no specialty in medicine for treating undiagnosed diseases. You just bounce around between doctors until you give up.