7 ms·

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 yo

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.

mattmight 14y ago
This comment rings too true. Most doctors quickly realize that they're outgunned when my wife and I start talking about our son. We have a lot more luck with PhDs than MDs.
- jseliger 14y ago
  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. EDIT: Here's the article I was referencing: http://www.newyorker.com/online/blogs/newsdesk/2010/06/gawande-stanford-speech.html http://www.newyorker.com/online/blogs/newsdesk/2010/06/gawan... : 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.
- crosh 14y ago
  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.
crag 14y ago
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.
wpietri 14y ago
So true. 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. [1] http://en.wikipedia.org/wiki/Grading_%28tumors%29 http://en.wikipedia.org/wiki/Grading_%28tumors%29 [2] http://en.wikipedia.org/wiki/Cancer_staging http://en.wikipedia.org/wiki/Cancer_staging
krschultz 14y ago
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.
- zug 14y ago
  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.
  - postfuturist 14y ago
    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.
    - its_so_on 14y ago
      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? Where is this attitude coming from?
its_so_on 14y ago
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.
wslh 14y ago
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.
deleted 14y ago
[deleted]

mattmight 14y ago

This comment rings too true. Most doctors quickly realize that they're outgunned when my wife and I start talking about our son. We have a lot more luck with PhDs than MDs.

jseliger 14y ago
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. EDIT: Here's the article I was referencing: http://www.newyorker.com/online/blogs/newsdesk/2010/06/gawande-stanford-speech.html http://www.newyorker.com/online/blogs/newsdesk/2010/06/gawan... : 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.
crosh 14y ago
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.

crag 14y ago

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.

wpietri 14y ago

So true. 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. [1] http://en.wikipedia.org/wiki/Grading_%28tumors%29 http://en.wikipedia.org/wiki/Grading_%28tumors%29 [2] http://en.wikipedia.org/wiki/Cancer_staging http://en.wikipedia.org/wiki/Cancer_staging

krschultz 14y ago

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.

zug 14y ago
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.
- postfuturist 14y ago
  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.
  - its_so_on 14y ago
    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? Where is this attitude coming from?

its_so_on 14y ago

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.

wslh 14y ago

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.

deleted 14y ago

[deleted]