Another medical miracle

I'm in biomedical engineering and I spend a decent amount of time trying to understand the psychology of doctors and the behavior of the medical system. I am curious - in your odyssey, what is the maximum number of visits that you had with any one doctor?

The reason I ask is that it loosely appears to me that, if the condition isn't life-threatening, many doctors act as if they only expect to see us once. They send us home to recover on our own, perhaps with a few self-care tips, or with a diagnosis and a referral. There isn't a single person qualified to diagnose and prescribe who "owns the ball" for your condition. There's a clinic called the Lanby (launched by the wife of the author of waitbutwhy, which has a writeup on their business model) in which you're seen by the same provider at every visit, and where your annual membership covers an unlimited number of visits. It's $325/month which is much more than I, for one, spend on healthcare annually, and it's not a replacement for health insurance, but this incentive structure seems to me like it would motivate doctors to actually help their patients get well efficiently. I'd be curious to know how they've fared in the couple years since the writeup.

Hm, so, I definitely agree about having very little faith in the modern medical system's ability to figure out most problems. I have a lot of experience with this myself and it's rough — I'm sorry it was bad for you and I'm glad you got better!

However, I'm pretty surprised that your protein levels were never tested! When I go to a doctor in America and tell them that some new thing is mysteriously wrong with me, their first recourse is pretty much always to order blood tests, and consequently I have had my blood protein levels checked six times in the past five years as part of a standard hepatic function panel. I'm not super familiar with the medical field, but from Googling it looks like if you had a protein deficiency, that test would turn it up.

I guess maybe because of the symptoms you were presenting with, no one felt the need to check your liver function? But if that's the case I'm confused why they do it to me all the time, since one of my main problems is mysterious musculoskeletal pain. Hm.

Disclaimer: I am not a medical doctor nor a nutritionist, just someone who researches nutrition from time to time.

I would be surprised if protein deficiency per se was the actual problem. As I understand it, many vegetables actually have a higher level of protein per calorie than meat (probably due to the higher fat content of the latter, which is more calorie dense), although obviously, there's less protein per unit mass than meat (since vegetables are mostly cellulose and water). The point is, though, that if you were getting enough calories to function from whole, unrefined plant sources, you shouldn't have had a protein deficiency. (Of course, you might have been eating a lot of highly processed "vegetarian" foods, in which case protein deficiency is not entirely out of the question.)

That being said, my guess is that you may be experiencing a nutritional deficiency either in sulfur or in vitamin D (the latter of which is a very common deficiency). Plant-derived proteins tend to have much lower levels of sulfur-containing amino acids (methionine, cysteine) than animal-derived proteins, and sulfur is an important component of cartilage (and of arthritis supplements). Both sulfur and vitamin D have been investigated for their role in musculoskeletal pain and other health issues (although from what I have read, results are more ambiguous for sulfur than for vitamin D with respect to musculoskeletal pain in particular). Eggs are particularly high in both sulfur (sulfur smell = rotten egg smell) and vitamin D, so if you were low on either one of those, it makes sense that eating a lot of eggs would have helped. It would be very interesting to test whether either high-sulfur vegetables (such as onions or broccoli) or vitamin D supplements would have a similar effect on your health.

This is one of the things that irks me when I hear medical professionals whine about how AI diagnosis is all hype because no machine could match the sophisticated pattern matching abilities of a real trained doctor. That's fantasy land stuff! Maybe at the high levels doctors are like that, here down on Earth most GPs for most problems have effectively an algorithm that's like a two layer decision tree at best. Is it because they don't have enough time or resources to dedicate to each patient? Maybe, but even that means that freeing up some at the easy tail end of diagnosis would improve things for everyone.

Did your blood work show protein deficiency, i.e. low total protein and (serum) albumin?

What's worse is that there are no shortage of quacks ready to take advantage of people with problems like yours, and that there are also no shortage of people that get fooled by quacks.

I have often wondered why doctors don't first ask: What are you eating? How are sleeping? Any unusual stresses in your life? 

It's really interesting reading this from the POV of a doctor in the UK. I see patients every few weeks or so who haved moved from the US, and their expectations of the health system are hilarious to me. But reading this makes me notice how much I've basically adjusted my expectations to a level of pretty substandard (in some sense) care - in that I expect that quite a lot of the time we just cannot figure out the answer to a problem, or help someone's symptoms. Whether to call this substandard I'm not sure - I don't know what % of those cases actually are solvable at the moment; but I do "give up" on finding a cause, not that infrequently, this is accepted practice among my colleagues. I had mostly until now thought of this as a consequence of the UK healthcare system (ie very overstretched, rationed care, specialists rejecting referrals from me unless the symptoms are really a certain level of bad, medicines not be 'allowed' on our local formulary because of cost, the incentive each day to be quick because of having 30 appointments squeezed into a day) - but this post makes me realise perhaps the NHS specific causes are only part of the issue.

The LessWrong Review [? · GW] runs every year to select the posts that have most stood the test of time. This post is not yet eligible for review, but will be at the end of 2024. The top fifty or so posts are featured prominently on the site throughout the year.

Hopefully, the review is better than karma at judging enduring value. If we have accurate prediction markets on the review results, maybe we can have better incentives on LessWrong today. Will this post make the top fifty?

Congratulations on fixing your problem!

I have an alternative diagnosis though: Maybe it was gout? That is, sodium urate crystals causing inflammation and pain in or around the joints. Toe involvement would very much suggest that, also the fact that it improved relatively quickly with a change of diet. Hips are not the most characteristic complaint in gout but I know two guys in real life who are on low purine diets and one of them is doing it for his hips. Doctors also found clinical indications of wear in his hips when he was around your age, but almost 2 decades later he is still doing great amounts of physical work, just the kind of which is known to be very hard on the knees. He's not audibly complaining AFAIK. What I want to say with this is that a diagnosis of osteoarthritis is not necessarily the end of the world. It can be that too, of course.

And I also know one case like this in fiction! There's a Danish-Swedish television drama where one of the characters has scrotal pain and a mortal fear of testicular cancer. He goes to the doctor and is told to lay off the beans because of gout in the hips. Just something I'm primed to notice in TV playing in the background.

Did you eat a lot of beans and lentils before the switch to more animal protein? Legumes have a good amount of purines in them. You mentioned fish and maybe opportunistic meat eating too? Was that small fish with skins, such as herrings, sardines or whitefish? Did you eat organ meats? Liver for the B12?

You mentioned one-legged squats. Ballet dancers do all kinds of high torque one-legged movements hinged at the hip and they often have snapping hips and hip pain; this is maybe because of the tendons are overgrown or just irritated and swollen from having to move in inconventional paths. If the pain returns, try some symmetric lifting for a while.

You mentioned pain after sitting in a weird position. Was that bent forward? That along with lunges making it worse sounds like it's the iliopsoas and its tendons in the lower end. Also known as hip flexor or tenderloin. When it's feeling sore avoid rapid and jerking movements like spurts and kicking activities like soccer. Wikipedia articles on snapping hip mention that symptoms in the iliopsoas area, as opposed to the iliotibial band around the greater trochanter, are assosiated with problems with the hip joint itself. I guess gout can be the sole cause without any irreversible damage in the joint. In any case remember that there are legs blown off in Ukraine all the time; many babies in Africa don't get their hip dysplasia fixed and live a life void of prospects and full of pain, of which you've only had a small taste; there's more to life than sports and running etc.

Disclaimer: I'm not a medical expert. I read professional magazines now and then.

I have great hopes for the new generation of doctors. I was pleasantly surprised when one said something to the effect of: "You did not evolve to be that frail. Don't blame yourself." I find this a great improvement from the doctors of old who had to posit all kinds of weird theories just to avoid saying "we don't know". Stuff like the theory of retrograde menstruation as the cause for endometriosis, or genetic etiology for common conditions like obesity, literally adds insult to injury: You are the cause; it's something you did; it's something you <i>are</i>. It's all right to entertain different possibilities when you're doing research, but why bother patients with some unproven trivia that does not help in the least?

I claim that the best practice when encountering common ailments with unknown etiology is to tell the patient that the most probable ultimate cause for the condition is a germ of some sort (Cochran&Ewald). The next most probable cause is some other environmental factor, the patient himself is most likely faultless in this regard. It's truthful and kind of soothing too.

I agree with your assessment on the current state of the US medical system, and unfortunately always needing to be your own advocate.    I encountered a similar situation with my daughter's feet which pointed inwards from a very young age and affected her gait, causing issues with back pain when she got towards her teenage years.   Despite taking her to multiple MDs (with good reputations) including her GP and orthos, they all said she was likely to grow out of it, and shrugged it off.    It took a tremendous amount of digging and good luck to find a MD who specialized in gait analysis and knew right away what the root cause was.

She had been born with her femurs twisted almost 30 degrees which resulted in the ball and socket at the hip not sitting properly to overcompensate to keep her knee straight on the other end of the femur.    Thankfully, he referred us to probably the top surgeon in the world for these types of procedures who was also local.   He ended up breaking both of her femurs clean through (staggered operations so she didn't have to be in a wheel chair), aligning them properly, and holding them in place with a rod through the center of the bone and the two sections secured with horizontal nails that screw into the main rod to keep everything in place while healing the breaks cleanly.   They'll be removed after around a year.

Quite an amazing procedure performed by a fantastic surgeon, and a great person...Without self advocacy on our part (or eventually hers as an adult), there is a very good chance she would have ended up never getting this diagnosed properly and resolved (and it would have caused major pain issues later in life; it's not just a cosmetic / gait issue).

That said, I suspect (as an amateur with a background in Biology/nutrition) that there was a good possibility the root cause of yours was actually a vitamin B-12 deficiency resolved quickly by the amount of eggs you introduced.   It's very easy to wind up with one if you were pretty close to true vegetarian and weren't doing things to ensure you mitigated the risk.   It's extremely hard for me to believe you were not getting minimum protein requirements with nearly any diet unless you were really just eating certain vegetables and no beans/lentils, rice, etc.  That said, I'm also wildly speculating as I have no idea what your actual diet was.   Just wanted to throw out B-12 deficiency as another possibility especially since it is pretty common in vegans in particular, that would have been another easy test for them to run (which for all I know they did, but again just speculating).

It would be interesting to know what your average diet consisted of as an aside, and apologies for getting off your main point, but it's an interesting case.   Glad you got it resolved either way!

We also have a "someone elses problem" milieu. So the ER's cant turn away the homeless but they onpy need to "stabilize" them.

Same with you or me really. So things that could be completely resolved with an inpatient stay dont end up with an admission because "cost". Nothing is definitively "solved" in a timely manner because of managed care.

So thongs are left to stew and get worse (in your case a proper holistic evaluation initially might jave involved exploring your diet vs years and multiple visits to all sorts of docs).

It ends up "costing" more but no one with decision power sees the cost because its spread over time and to different hospitals or communities etc

So the first person to see someone has no incentive to spend the resources to dig deep and then to actually solve the problem.