It pays to become an expert in your own (or your family members') medical conditions, because you'll quickly become more of an expert than 99% of the doctors you will rely on for care. It helps when they all ask the same dumb questions, which they will do. If your condition is mildly rare, you'll notice when you see a new doctor, that their knowledge will be limited to what you found out in the first hour of internet research on the condition, unless they are a specialist on that particular condition.
I have a slightly rare genetic condition, and I've only met 2 doctors who know more than I do, and that's because they do active research on the exact condition and have authored or co-authored multiple research articles on it.
Sir, your story is absolutely amazing. You, your wife, and your son deserve to be recognized for your struggles that will undoubtedly help others in the future.
Part of the problem is that diagnoses and treatments are expanding faster than the ability of humans to memorize and learn about all of them. IIRC there are close to 14,000 diagnoses—just diagnoses!—that we know about. Combine that with the numerous drugs, treatments, and other changes, and it quickly becomes apparent why people with unusual conditions are better off making themselves experts than in relying solely on the expertise of doctors who aren't specialists in whatever they have.
Half a century ago, medicine was neither costly nor effective. Since then, however, science has combatted our ignorance. It has enumerated and identified, according to the international disease-classification system, more than 13,600 diagnoses—13,600 different ways our bodies can fail. And for each one we’ve discovered beneficial remedies—remedies that can reduce suffering, extend lives, and sometimes stop a disease altogether. But those remedies now include more than six thousand drugs and four thousand medical and surgical procedures. Our job in medicine is to make sure that all of this capability is deployed, town by town, in the right way at the right time, without harm or waste of resources, for every person alive. And we’re struggling. There is no industry in the world with 13,600 different service lines to deliver.
Note that this was published in 2010. By now those numbers have probably grown.
I've also had personal experience with the doctor-doesn't-know problem: I had an unusual disease seven years ago, and the first specialist I saw said that she Googled it a few hours prior. Her partner gave me completely wrong information; he didn't even know how to treat what I had. Fortunately my family found a research center where some of the major researchers in the field worked, and the treatment I ultimately got had been published a few months before I started (it had become standard two or so years prior). If you're curious about specifics, send me an e-mail—it's in my profile.
From 1995 though 1998 I had full blown AIDS. I knew more about care, medication and treatments for AIDS then (almost) any doctor I met.
It was one of the reason so many AIDS patient groups formed (I sat on the board of PWAC and was a member of ACTUP). Because at that time, either doctors did not or could not educate themselves on the subject.
Now, of course, it's a different matter. With HIV being a "manageable" condition (in the West anyway)every ID doctor worth his weight can talk on the subject.
From experience I can tell you, you have to manage your care. You can not expect (nor should you either) a doctor to do it for you.
My brother nearly came to blows with an emergency room doctor who didn't know the difference between a cancer grade [1] and a cancer stage [2]. Confusing the two, he started to give us the "time to let go" speech, when the appropriate medical action was immediate treatment to suppress brain swelling. Had we not known the difference, she could have died right there.
And there were a number of other less dramatic occasions when being on top of the details solved all sorts of problems when dealing with non-specialist doctors. Which is not to knock them; there are a lot of ways that bodies go wrong, and trying to extract any sense out of the phone book of printouts and scribbled notes in my mom's medical charts is not something anybody could do quickly.
To be fair to (most) doctors, especially your primary physician, have to diagonose a huge range of conditions. The edge cases are rare and so they are not as well versed on them.
System specialists are an order of magnitude better. I.e. going to an Ear, Nose & Throat doctor if you have Asthma.
Disease specialists are the pinacle. Sometimes these are researchers rather than normal doctors.
It is actually counter-productive for doctors to learn too much about rare diseases.
When a patient presents with a set of symptoms, the doctor has to decide whether the patient has a boring common disease or the cool disease which is 100 times rarer. Human beings can't make good judgements about probabilities like that. If every doctor were trained to recognize a rare auto-immune disease that looks just like the flu, plenty of flu sufferers would be misdiagnosed. Far better to teach doctors the treat for flu and refer the cases that don't respond to a specialist.
It is a common problem with doctors fresh out of med school. Common enough that most doctors are taught to "not look for zebras when horses are more likely." If you spend enough time in a hospital you will hear veteran doctors dismiss interns and residents saying, "she's just looking for zebras."
It is far more common for a doctor to underdiagnose a patient that presents with flu systems but actually has the "cool, rare disease". I just read a good article on this, I'll try and look it up.
Anyway, I found what I was looking for; I had read an excerpt of a book called How Doctors Think, where the author discusses the availability heuristic:
In the theory, "availability" is defined as the tendency to judge the likelihood of explanation for an event by the ease with which relevant examples come to mind. In a clinical situation a diagnosis may be made because the physician often sees similar cases in his practice — for example, the misclassification of aspirin toxicity as a viral pneumonia, or the improper recognition of an essential tremor as delirium tremens due to alcohol withdrawal in an indigent urban setting. Groopman argues that a clinician will misattribute a general symptom as specific to a certain disease based on the frequency he encounters that disease in his practice.
Doctors are never going to be perfect; if you ask me following such a heuristic is probably going to work pretty well almost all of the time. As long as the doctor isn't a dick about it (with a god complex) and is willing to accept that they may be wrong..
In reference to my first comment: Mis-diagnosing "cool, rare diseases" as the flu by definition can only happen very rarely. Coupled with the fact that people are often mis-diagnosed with rare stuff, means that your original statement that "it is far more common..." is obviously untrue.
It must be frustrating if you are the person with the rare disease. But "not looking for zebras" serves the other 99.9% of people quite well..
You must be parsing my sentence differently than I am. Clarified:
It is far more common for a doctor to underdiagnose a patient that presents with flu systems but actually has the "cool, rare disease" [with the flu than it is to correctly diagnose them the first time].
In other words, within the ecosystem of "cool, rare diseases", it's far more likely to be mis- or under-diagnosed the first time than it is to be correctly diagnosed the first time. One reason for that is they're not common diseases (so the docs won't have a lot of experience diagnosing it), but another fascinating reason is that they have already sort of diagnosed you in their heads before getting into the data.
If you're interested in the topic, you should pick up the book I linked above. There's a fascinating study in there that tests this problem: the study takes two sets of identical x-rays with an obvious primary diagnosis like a cancerous tumor and in one set, they add another problem (blocked artery or torn heart valve or something else obviously serious and life-threatening). They give the x-rays to doctors, inform them of the primary diagnosis, have them look at the x-rays, and track their eye movements. Here's the crazy part: every one of the doctors lingered over that second, undisclosed problem, indicating they saw something wrong. Yet none of them reported the problem. (It's been a while so I might have gotten the specifics wrong, but the gist is there. It's really fascinating and I encourage you to read it on your own.)
On a personal note: take it easy with the "by definition" and "obviously untrue" stuff. I know this is the internet and all but it makes you seem hotheaded, especially when we might be misunderstanding each other.
You're right; I'm sorry, I should have given you the benefit of the doubt and parsed the sentence that way.
It is interesting about the 'bias' of doctors towards their own experience. I guess my point is that statistically this kind of 'bias' towards the most common syndromes is a net positive for society; it's an allocation of resources thing--we don't have so many doctors that we can afford them all to be running off on weird tangents investigating possible rare diseases that aren't there...
Again, sucks if you do happen to be the one in X thousand that has the rare disease. Am I being too utilitarian?
Regarding tone: apologies; I agree it was an overly flippant comment. It was more a reaction to some of the other doctor bashing that was going on in this thread that fails to see the woods for the trees. I see now that that wasn't your intention...
I have a genetic disease that shows up in 4/100k people, so rare, but not that rare. Any sizable town has at least a few dozen people with my disease.
In my experience, "an order of magnitude better" in specialists means they've at least heard of it, but know nothing about it. Every time I move, I have to spend some time educating my new specialist on the disease. I know damn well that every time one of them excuses themselves in the middle of the exam, they're going to look it up on the internet. It's pretty disheartening.
> I have a genetic disease that shows up in 4/100k people, so rare, but not that rare. Any sizable town has at least a few dozen people with my disease.
If one in 25k people has the disease, you need a 1 million+ population for city to have a 40 (a lowball "few dozen") incidences of the disease, assuming random distribution. There's only 10 cities in the United States that fit that description* and only London is big enough in the UK. There will be only 100 or so the medium sized states of say Utah or Nevada
Takes a lot more than a medium sized town and that sounds extremely rare condition to me.
I come from a medium sized town. Given your numbers, there's a good chance there is no one in the town has this disease and i wouldn't expect any of the doctors to be knowledgeable about it.
4/100k is still exceedingly rare. There are probably 100s or more diseases that show up in 5/100k so it's hard to know them all. Meanwhile the doctor probably sees the top 15 diseases all the time..
My girlfriend has a condition that affects 12% of the female population to a varying degree. Some doctors knew absolutely nothing about it. Some were able to solve it easily.
If the symptoms are 30% similar to a disease that 99.999% more common, and 70% similar to a disease that's 0.001% common, the doctor would still be correct most of the time by suggesting that the patient had the common disease, even though the symptoms were a better match to the rare disease.
Yep, it's also disheartening to see them holding a printout of one of the few articles available online, which I already know is pretty out-of-date and down-right wrong in places.
Why don't you just tell them that you're pretty well-versed? Doctors are pretty smart. I wouldn't presume to say this is always appropriate, but depending on the rapport they might listen attentively to what you know from your own research (though they would probably check before acting on it.)
Doctors know very well that a person with a specific rare disease has a lot more incentive to have spent in-depth research on it than they did when they last ran across it...
I mean, these days there are whole forums dedicatd to a specific disease. If you told the doctor, "You know, I ran across a forum for people like me, a lot of people have said they had very bad results with (x) despite the clinical trials, so I would prefer (y)"...you don't think they would listen to you?
You're making a lot of assumptions that aren't true. I regularly instruct doctors on my condition in detail, they do usually listen and are reasonable. However, I am often disappointed by the lack of depth of the research they do in advance of meeting (and billing me exorbitantly).
Recently, my sister (same condition) drove a couple hours to see a specialist who had obviously not read her file or done any research and made some truly awful suggestions (one that could certainly have lead to her death if she had followed it). He billed her for the time.
Doctors are like coders, some are orders of magnitude better than others. Some are so bad, they have a net negative impact on your health.
You speak like someone who probably hasn't spent a good chunk of their life as a patient. You are correct; the best doctors know the limit of their own knowledge and will respect a knowledgeable patient. I respect my top notch specialists more than anyone on the planet. But those are the best doctors. There are many more average and outright bad doctors, just like any other skilled profession. Some that can't keep their ego in check, some that just aren't very good at deconstructing a complex problem.
Not only with doctors, but every professional have problems when there are more than one cause, they try to find one cause to the current effect. This is something where developers and it administrators used to solve better because they "breath" problems with multiple causes.
I don't like your tone. I have no horse in the race and am not a doctor, but doctors aren't Gods. They learn certain foundational things (names of bones and muscles; organic chemistry) then they learn thing related to the practice that doesn't necessarily rely on any of that stuff. (Diseases; drugs)
For diseases, you should try reading through the Merck manual (available online). Everything from gynecology, oncology, psychiatric conditions, is all there. If your doctor does a correct diagnosis by asking the correct "dumb questions" that is already amazing. Why should a general doctor be more of an expert in every condition than a person who has it? Look up any individual thing in the Merck manual and it has 2-7 pages. Why shouldn't a person who has that particular disease know more about it?
Let's make an analogy. Say your computer has obscure memory errors because you work in a place that bombards them with alpha particles (or whatever). ECC memory is very important to you. And, therefore, I would expect you to know more about ECC memory than "anyone except two engineers doing active research in this exact condition."
It's just one tiny thing in a myriad list of things to know. There is no reason individuals shouldn't take control over their individual conditions and become educated on this subject.
Let me put it this way. If you have a pet guinea pig with asthma, then within a day of learning that you should (or at least could) know more about asthma in guinea pigs than your vet does, because guinea pigs are just 1 species he or she deals with, and asthma is just one condition. Why shouldn't you know more?
Of course, there are systemic things that are very hard for you to understand about what you're reading, and on this you might have a much poorer understanding than your vet...you don't know how the parts work together. it might be obvious to your doctor that asthma puts the guinea pig at risk of - whatever, lung cancer if you smoke near it or whatever, I'm just making it up - just due to the organs involved, whereas you don't know this unless you read it. The point is that you can read all about one CONDITION but not about the whole system, which is what takes so much time to learn. If you MEMORIZE 3 pages of facts about your condition and read them out loud, then there are parts that you would read aloud that say nothing to you, but are deeply meaningful to a doctor.
When it's prescriptions and proscriptions, it's obvious. ('don't feed it raw meats'). When it's general descriptions then it is harder.
Basically, the proper relationship between a person with a rare illness and a GENERAL doctor is, person: "I read that this condition also puts me at risk of a stroke. Could you tell me what that means?" Because you don't UNDERSTAND what a stroke even means, the way a doctor does.
Then your dr. can proceed to fill you in on the parts you don't understand...even though they might not have even recalled that your condition increases the risk of stroke. (or heart attack or whatever). They're not walking encyclopedias, you know: they're experts, just like any other expert in any other field.
I think I know what you're trying to say: that it's not hard for us to learn some facts, but they're less useful without a broader knowledge of human physiology that an MD would be presumed to have, and we don't. And there's certainly truth to that.
On the other hand, there really are things the lay person can learn and understand well, even in the complex human body.
I have an unusual, if not rare, condition (Crohn's Disease, which GPs now usually seem to have a decent handle on, but that wasn't the case 20-30 years ago). I've had the condition for over 30 years. Barring advancements in science (which I follow anyway) and other possible complications (which I would be discussing with my GP and GI docs anyway, much of what the system forces me to use them for is not only a waste of their time, but problematic for the patients like me because it forces me to wait for an appointment to get the necessary care.
When I have a flare-up, I know exactly what needs to be done. If I walk into a GP's office, or even a GI doc, all they're going to do is rubber-stamp the prescription I know I need, and ask me to come back later to follow up. I already know what I need, the system is just wasting everyone's time, and withholding necessary care.
The thing is that the human body doesn't really follow a strict blueprint: my own deviation from the norm is the reason I'm there in the first place! So by definition, the doctor can't just give me a textbook answer. It all depends on the way the disease affects me personally.
Now, it's true that I may not have sufficiently broad understanding to see when a complication is arising, to handle it specially. But that's no reason to forestall proper care. I'm perfectly capable of starting the treatment on my own, and visiting for further consultation in the timeframe that first available appointment allows. (If such a consultation is so critical, surely getting the treatment rolling is just as much).
But the way care is delivered now, the doctors comprise a priesthood to which we must show obeisance. In my experience, the system could work both more efficiently as well as more effectively if treatment were more of a partnership, with the doctor contributing the deep understanding that he's worked hard for, but a patient also contributing based on the very focused opportunity to learn about his own condition, especially given the unique and personal ways that illness can affect each of us.
For some people this would work well, and when you do know a lot about your condition, it is very annoying to have to deal with doctors who have to come to and verify conclusions that you have already made.
I have a pretty dense medical knowledge compared to the average person. My mother had a lot of medical issues that I studied in detail. I have several of my own that I have also studied at great length, and I used to be an EMT. Waiting around and going through a tedious process for a new doctor to "catch up" with you is frustrating.
A lot of people aren't like this, though. I have a friend who, after weeks of not feeling well, had, at one time, read pages and pages of research on a particular disease and had convinced herself that this was the thing she had, this was why she was sick, and this was what she needed treatment for. What she failed to neglect was the title of the paper -- she had diagnosed herself with kennel cough.
As much valuable information as there is available on the internet, I also feel like the internet breeds hypochondriacs like nobody's business.
So I don't really think we need a change in the way healthcare is delivered, exactly. I think what we need is more education for would-be doctors about how to better engage and involve a patient in their own care and how to talk to a patient sincerely about their condition and evaluate the people who just googled something vs. the ones who genuinely know what they're talking about, and then how to work with the latter.
Good doctors will do this naturally, but a lot of doctors will take the attitude that they are the doctor, they know best because they have been to medical school. They may well have a better overall understanding of things, which can very well be extremely important when looking at how diseases and medications interact in conjunction with and affect one another. However, there simply isn't enough time for them to become experts on everything. There should be more emphasis on this fact and more instruction on how to work with the patients to make them the experts so that they can be more involved in their care.
I feel like I'm not making my point well, but this is starting to ramble a bit, so hopefully that makes sense.
I can't possibly understand the deepness of knowledge you had to acquire to deal with your condition. No way.
This being said, unfortunately, for every awesome, smart and knowledgable person, there are tens and hundreds of people researching their cough on the internet and wasting everybody's time.
That being said, yes, the system could certainly be improved in most countries. A hard part is managing responsibilities. The doctor you go to has the responsibility of giving you sound advice to the best of his (and hopefully the scientific community's) knowledge.
If he did not follow the methods laid out by standard care, he would not be doing that. He would be irresponsible. Of course, there are always things that are on the fringe but would be beneficial, but then again, who knows, he might just kill a group of people down the road because he gave a fringe treatment to the wrong crowd.
Now to the point you rose for your own situation: it seems that your GP seems to be making it fairly simple for you (in a good way). Or was that a hypothetical scenario with the quick rubber stamp and so on?
I have a friend with Crohn's disease. After 10 years on medication he injected himself with hookworm. He has now been medicine free for over a year with fewer symptoms than he had before.
There was a This American Life/Radiolab story about a guy who rolled his own Helminthic Therapy. If it weren't for the fact that the therapy was illegal (which is a whole other issue) and therefore very difficult for him to get, it would hardly have been a "story." Just an amazing cure for allergies/autoimmune problems. But the story was really in how he had to wander all over Africa shuffling through latrines to get a few hookworms. http://www.thisamericanlife.org/radio-archives/episode/404/e... . It's act 3.
I don't see why you can't have the Doc/Pt relationship you are speaking about.
Have you stuck with one GP or GI doc? Have you jumped around a lot? It takes time to build the relationship you are talking about. You can't ask for a "partnership" and then dismiss the other side ("priesthood").
I'm not allowed to have the relationship I describe. Even when I really do know the right answer, FDA laws require me to go to the altar of the MD to get a signed prescription. I'm forced to wait two weeks to get that appointment, even though I know the right answer.
(In reality, the doc is generally willing to call in the script on my say-so over the phone, but he's not supposed to do this.)
I don't get it. You are saying you don't actually have to go see a doc "in reality" then how are you complaining that you have to see a doctor before getting treated.
First, mad props to you for taking control of your situation. Unfortunately, the vast majority of Americans can't (or won't) do that. If americans had control of their own medical actions, they would be even more susceptable to medical advertisements and would ultimately make terrible medical decisions (like, for instance, not giving their children vaccines due to fears about vaccines causing autism).
Wow, I love it when people make an accusation and it's better leveled at them. It's your tone that I don't like.
The original posted was expressing a well-formed opinion, one that is backed up by a lifetime of experience, his and mine.
I can't claim to have an exotic or serious disease, but I do have a lot of chronic medical issues. I cannot tell you how many years I've wasted dealing with Dr's that 1) thought they knew what they were doing (YES, behaving God like!), and 2) had no clue.
The problem with Dr's is they are taught to project confidence, at the expense of their patients.
> thought they knew what they were doing (YES, behaving
> God like!),
In my book, there is a significant difference between 'playing like God' and 'thinking that you know what you are doing.' I'm thinking that you left out some detail here, otherwise this just comes off as bitterness because someone that thought they were doing the right thing turned out to be wrong.
I think an analogy would be with the 9-11 "truthers" who trot out various facts and conclude that the towers were brought down by demolition charges rather than the plane strike.
Their facts are not wrong, they are just misapplied and someone with a more general understanding of physics knows that.
One of the facts quoted is that jet fuel doesn't burn hot enough to melt steel. By itself, that is true. But the temperature at which jet fuel burns varies depending on all sorts of conditions, and the standard lab setup is not at all what the towers were. For example, fuel in a jet engine certainly burns hot enough to melt steel, it's the limiting factor in jet engine design.
Yeah sure, so it was just an unbelievable awesome coincidence that both towers collapsed in a way which normally takes demolition experts weeks if not month to achieve. And then there's building 7, which also collapsed in this perfect way and it didn't even get hit by a plane. It may very well be that the fuel burnt hot enough to melt the steel but it hardly explains the way the towers collapsed, not to mention building 7. It's just ridiculous.
You can immediately dismiss any "experts" who assert that jet fuel doesn't burn hot enough to weaken steel. That would include all the ones I've seen write web pages about it.
I forgot to mention - steel loses its strength at temperatures far below its melting point (which is why blacksmithing works). So anyone who talks about the steel needing to "melt" for the towers to collapse is also a quack.
There's a doctor named Paley in Florida who specializes in lengthening limbs. I've talked to many of his patients and their parents.
Most doctors, when presented with a child who has one short leg, recommend amputation (the difference in length causes hip and back problems down the line). I'm sure the doctors could easily find out about Paley if they looked into it.
The parents I've talked to are the few who have refused to accept that they have no choice and have done their own research. My heart aches for the kids whose well-intentioned parents didn't question their doctor.
I have a slightly rare genetic condition, and I've only met 2 doctors who know more than I do, and that's because they do active research on the exact condition and have authored or co-authored multiple research articles on it.