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Comments: 582 +- Science: Teen Diagnoses Her Own Disease In Science Class on Friday June 12, @05:38AM
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by
samzenpus
on Friday June 12, @05:38AM
from the be-you-own-best-diagnostician dept.
from the be-you-own-best-diagnostician dept.
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medicine
18-year-old Jessica Terry suffered from stomach pain, diarrhea, vomiting and fever for eight years. She often missed school and her doctors were unable to figure out the cause of her sickness. Then one day in January someone was finally figured out what was wrong with Jessica. That person was her. While looking under a microscope at slides of her own intestinal tissue in her AP science class, Jessica noticed an area of inflamed tissue called a granuloma, which is an indication of Crohn's disease. "It's weird I had to solve my own medical problem," Terry told CNN affiliate KOMO in Seattle, Washington. "There were just no answers anywhere. ... I was always sick."
You will soon meet a person who will play an important role in your life.
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Was she the.... (Score:4, Funny)
...FIRST person do this?
Remeber it is practicing (Score:5, Insightful)
This is why they call it 'practicing medicine'. Not many Doctors are that good at it yet.
Seriously. The most common form of practicing medicine is actually better phrased as 'statistical medicine'. If you have a complaint with a set of symptoms, the Doctor will look at your overall and family health history, your age and basically look at what is most likely to be the diagnosis. If your real issue is not blatantly obvious to see, or you just happen to be unfortunate enough not to fit this well oiled set of statistics. Then you are likely to go undiagnosed. Very few Doctors and specialist will take the time and effort with every patient to hit that few percent that fall outside. They almost always figure they will get a second shot at it at least without causing to much harm or risk to the patient.
The practice of practicing statistical medicine is well known in the profession. There is plenty of literature within the various disciplines about the situation and costs involved. What I don't understand is that the title should not have been this individual diagnosed herself. More appropriately. 'How many patients routinely find the cause of their illness' before the medical profession does, like this woman did. I would hazard a guess that a 'Specialist' level of failure is statistically related to the statistics they use, on your specific complaint. To put it another way. If we still deal with only the specialist level of care, then over one year period. If 10 patients of the same demographic come into the office with the same complaint and the actual disease has only a 1% chance of hitting that age group. But for argument sake all actually have this disease. He will either get only 1 wrong or he will get it wrong for all but one. Guess what really happens? Use statistics if you wish. :)
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Re:Remeber it is practicing (Score:5, Informative)
Slightly offtopic rant: IAAP (I Am A Physician), and we have to practice statistical medicine. But first and foremost, we have to listen to our patients. A good story beats statistics 9 times out of 10. But that means we get burnt 10 percent of the time. The patient population understands that. The health care industry understands that.
There's the old saying, "If you hear hoofbeats, look for horses, not zebras". If you want to practice medicine in a different way, go for it.
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Re:Remeber it is practicing (Score:5, Insightful)
I've had a cough for about eight years now. Is there a secret code word I can use to say "No, really, I _have_ looked into this before, several doctors have, and it's probably not horses because they've given me medication for horses and it doesn't work. Maybe it's zebras? I'm not supposed to be the one coming up with ideas, here. No, I don't want zebra medication, I'm just saying I want you to actually look into this, take some blood or ask a couple or non-basic questions. Can I please actually be diagnosed instead of given whatever samples of allergy medication [with the same active ingredient and a newer more-relaxing name!] got dropped off by a salesperson last week and that I really don't need?"
See, It's fine if 10% of people get screwed over the first time, but if 10% of people get screwed over the first time and have no way of saying "that didn't work, I'd like the non-statistical one now, please", that doesn't work.
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Re:Remeber it is practicing (Score:5, Insightful)
Yeah, I have to call bullshit on some of this. Not because I'm calling you out personally, but from my experience with doctors, they aren't looking for zebras, but they aren't looking for horses either. When you tell them you're hearing hoofbeats, they say, "Meh, noises happen sometimes. Most likely harmless. If it is a horse, let me know after you've been trampled and I'll see if I can patch you up then. See you next time!"
I've had a few different doctors in the past few years. I came in complaining of a set of symptoms one year, and the doctor said, "Meh, probably nothing. Don't worry about it." The next year, I made the same complaint to another doctor, and he blew me off too. The next year, I was hospitalized for a condition that was completely connected to the prior symptoms. Gee, might that have been worth looking into?
Still, no diagnosis. The doctors I've gone to don't know what it is, but don't want to do any more tests, either. I have insurance, but they still give me the run-around. Every time I go into the doctor, I can tell that he hasn't done any research, reviewed my records, or put a single thought into my situation other than during the 10 minutes I'm in the room with him. He opens up a little folder, looks at his notes from last time, says, "Nope, still don't know what it is. But you're not doing too badly right now, so let's not worry about it. See you next time!"
I don't want to offend you personally, but your profession sucks. I used to fix computers for a living, and if I put in as little effort into my diagnostics as the doctors that I've seen in my life, I would have gotten fired. Still every doctor that I go to acts as though he's doing me a favor, like he's my boss and gets to tell me what to do.
The only excuse that I've heard that I find at all understandable is, I've read that PCPs are overloaded because there's a shortage, and they're forced to spend their time dealing with insurance companies rather than treating patients. I don't know if that's politically motivated hogwash, but either way, these "professionals" aren't doing their job.
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Re:Remeber it is practicing (Score:5, Informative)
Me: I'm having seizures.
Doc: No, you're not.
After six years, four doctors, and one car crash, I finally get hooked up to an EEG machine.
Doc: Oh, hey, check this out. You have epilepsy.
Me: I know. I told YOU that.
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I suspect I may have Multiple Personality Disorder (Score:5, Funny)
Re:I suspect I may have Multiple Personality Disor (Score:5, Funny)
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Re:I suspect I may have Multiple Personality Disor (Score:5, Funny)
IWtR woerkedd oouth briplliantly fopr me . Engvry bok;dy shold tryuk oit. Nevtr fgelt nbetytere.
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Surprised? (Score:5, Insightful)
Re:Surprised? (Score:5, Interesting)
I've been struggling with lactose intolerance for a similar period of time and also had similar, unsatisfactory, experiences with doctors.
The one to diagnose it, finally, was me with a little help from Dr. Google.
My wife has made similar experiences with gynaecologists. Some were actually telling her that the pill had no side-effects. Unbelievable, really.
Also, some doctors she consulted and whom prescribed drugs would say that said drugs did not interfere with the pill, when, clearly stated in the package insert, they did.
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Re:Surprised? (Score:5, Insightful)
Crohn's disease is pretty common, so how come it wasn't diagnosed? The idiot medicos just pocketed the money for tests, hospital stays, appointments, medical certs etc for 8 years while the girl suffered? Hmmm. Come to think of it I'm not that surprised. There are far more quacks out there than decent doctors in my experience.
Well, Wikipedia can be suspect at times, but here's what it says (http://en.wikipedia.org/wiki/Crohn%27s_disease#Symptoms):
Really sounds to me like a combo of on-again off-again symptoms and symptoms that are fairly generic (i.e., shared w/ lots of conditions) than doctors and labs trying to squeeze ever last buck out of someone and their insurance. Now, if there is a problem if the first thing they do is run expensive tests for exotic diseases or something like that. I mean, a responsible physician would consider the a priori odds of each condition. And while I'm sure there are plenty of "quacks" out there, I'm not sure that's the first conclusion I would reach for in this particular case.
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Re:Surprised? (Score:5, Insightful)
Really sounds to me like a combo of on-again off-again symptoms and symptoms that are fairly generic (i.e., shared w/ lots of conditions) than doctors and labs trying to squeeze ever last buck out of someone and their insurance. Now, if there is a problem if the first thing they do is run expensive tests for exotic diseases or something like that. I mean, a responsible physician would consider the a priori odds of each condition. And while I'm sure there are plenty of "quacks" out there, I'm not sure that's the first conclusion I would reach for in this particular case.
Exactly! Her symptoms could have pointed to IBS, poor diet, allergies, repeated food poisoning or even hypochondria. I don't expect a doctor to run every patient with a headache through an MRI. If this poor student truly was visiting quacks, they would have run every test known to man on her just to pocket the CHIP money!
What I really want to know is how they got a sample of her intestinal tissue for a high school science class.
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Re:Surprised? (Score:5, Informative)
According to the article her pathologist gave her the slides for the class project.
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Re:Surprised? (Score:5, Interesting)
I thank god every time I go to my doctor. He's awesome. I met him because I needed a second opinion. I was developing carpal tunnel syndrome and my old doc wanted to operate, so I did the smart thing and got a second opinion. My current doctor was like "Take that brace off. Take one aspirin every morning and it will clear up within a week or two. Here's a strong analgesic to get it started. See your tendons are inflamed. The swelling causes the tendons to be sore because they are pushing out against the "guides" (he used normal person speak for me). This is a vicious cycle because this rubbing causes further inflammation. The aspirin will take the swelling down and allow the irritation to heal. You are definitely on your way to CTS, but you don't need an operation yet and it's preventable."
Within a week it was gone. He's been my doctor ever since.
He recommended that I start working out and biking to fix my chronic acid reflux problem, which also worked. My old doctor just put me on medication. I'm pain and completely medication free because of this guy. Not bad for someone my age.
Great doctors are out there. Hope you find one, listen, and do what they tell you...
-Viz
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it's called evolution... (Score:5, Funny)
survival of the richest means those with the ability to earn more could reproduce more and dominate the gene pool.
- except they don't
for questions-- see the first 15 minutes of "idiocracy"
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Re:it's called evolution... (Score:5, Interesting)
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Re:it's called evolution... (Score:5, Informative)
True but most rich people didn't inherit their wealth (http://www.smartmoney.com/spending/rip-offs/10-things-millionaires-wont-tell-you-23697/ "or take the most common path: running your own business. That's how half of all millionaires made their money, according to the AmEx/Harrison survey. About a third had a professional practice or worked in the corporate world; only 3 percent inherited their wealth.").
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Re:it's called evolution... (Score:5, Insightful)
So what percentage of those "self made" people had wealthy parents who could pay to put them through the best schools and connect them with those who could help them succeed?
Take Gates for example. His parents were well to do lawyers who sent him to Harvard and it was his mother who directed IBM to him for DOS. If he had been born to minimum wage parents would he be wealthy now? Maybe but much less likely.
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Re:it's called evolution... (Score:5, Interesting)
Pure FUD.
I live in a country with socialised medicine and it's funny, because we also have private medicine and insurances, but people with really bad diseases get sent to the public system because the privates refuse to spend money treating them. And they lack the equipment, anyway. It's expensive.
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Re:Surprised? (Score:5, Insightful)
It's called capitalism. Ain't got cash? Well we ain't got the answer. Gotta love it. Survival of the richest, litteraly. How did this benefit mankind?
Then Louisiana must not be capitalist...
My (self-employed, no insurance) sister was pretty rapidly diagnosed with Crohn's more than 10 years ago.
Maybe it's just that doctors suck in Washington.
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Re:Surprised? (Score:5, Funny)
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Re:Surprised? (Score:5, Funny)
Yeah a lot of self diagnoses probably revolved around: "It hurts when I pee ... that bitch/bastard" :-)
if you can't remember whether the offender was a bitch or a bastard, you're probably partly to blame
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Hmm (Score:5, Interesting)
Re:Hmm (Score:5, Funny)
I don't know, I used to suffer from the exact same symptoms during my years at university living on curry and cheap lager. Bad eating habits is the first thing that came to my mind personally.
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Re:Hmm (Score:5, Funny)
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Re:Hmm (Score:5, Insightful)
Well, experts make mistakes too, and they're different than tyro mistakes.
My primary care doctor is experienced and well known in the local medical community for his skills. One time I had an infection on the right side of my face; it was puffed up and rashy and I had a temperature of 103. He told me to get into his office right away; it sounded serious and he wanted to see me himself. He didn't want to leave this to some kid doing his residency at the emergency room. So he looks through my medical history, scrutinizes the rash, and in his best Sherlock Holmes manner announces that I have shingles. Shingles? Of course! I had chicken pox when I was baby, but the virus can stay dormant for decades, only to emerge as shingles.
So he sends me home with a prescription for Acyclovir ( which makes me sick to my stomach on top of having an infection), and instructions to call if anything changes at all. So I take my antivirals, and the next day I'm not any better. The day after that, my temperature goes as high as 104 and now the left side of my face is starting to swell. I call him up and as soon as he hears that he knows he was completely wrong. Shingles spreads along nerve paths; it doesn't cross the center of the body. He gives me an antibiotic prescription and by my second dose I felt great. I had a temperature of a 100, but after 104 that feels wonderful. After a full day on the antibiotic I was pretty much back to normal.
Every time I see my doctor now, he looks sheepish, because he made such a big point of not trusting my case to some kid straight out of medical school. The irony is that I'd have been better off with that kid just out of medical school. That kid wouldn't have been so certain based on his clinical experience of similar looking rashes. He'd have double checked, maybe done some kind of test, buy my doc had seen this situation before and dealt with is successfully. What I had was a staph infection, which can take on a wide variety of appearances. My rash apparently looked a bit like slightly atypical case of shingles. I must have been so satisfying when his memory dredged up my childhood chicken pox and made that connection. I'll bet that fact that it was a little atypical looking actually made the conviction more firm, because it made the deduction seem all that more clever.
I understand this, though. I've dealt with enough experts in my work to recognize that this is the kind of mistakes experts make. A conclusion that ties up all the details of a problem tidily, yet so unlikely to be arrived at by a less experienced professional is almost irresistible. You can't expect even an expert to avoid mistakes. However, you do expect him to be on the lookout for mistaks and to correct them. The fact that the kid in this article had the problem for years but they never went back to the start of the decision tree to see where they went says something bad about her doctors.
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Re:Hmm (Score:5, Insightful)
I call him up and as soon as he hears that he knows he was completely wrong.
and
Every time I see my doctor now, he looks sheepish, because he made such a big point of not trusting my case to some kid straight out of medical school.
These two sentiments are why I'd trust your doctor. Everyone makes mistakes. Your doctor seems to be good at realizing when he did it, correcting his mistake quickly, and remembering it for a while (enough that he feels obviously guilty). That'd make me trust more that he'd care and do the right thing by me to the best of his ability.
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Re:Hmm (Score:5, Funny)
It's funny you should mention Scrubs--in one episode [mopnt.com] Dr. Cox teaches a lesson about exactly that.
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Health Care (Score:5, Funny)
Maybe an old Crohn's disease (Score:4, Interesting)
So what (Score:5, Funny)
I diagnoezd my own disleksya at skool yeers ago. Since zen I'v goten a lott beter.
Re:So what (Score:5, Funny)
That's not funny. My brother died from dyslexia.
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They couldn't diagnose her? (Score:5, Insightful)
Still, kudos to her.
The fresh pair of eyes have it (Score:5, Insightful)
Re:The fresh pair of eyes have it (Score:5, Insightful)
Also, the fact that this patient had a vested interest in making the diagnosis means that she would have examined the slide thoroughly. (Doctor) Richard Cavell
That's what I would expect from my doctors!!!
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What did they think it was? (Score:5, Informative)
If you go to "My Electronic MD (dot com)", tell it you're a female, and give it the symptoms "chronic diarrhea" and "fever," Crohn's Disease is the first of three things to pop up, along with Ulcerative Colitis and Infectious Colitis.
Of course, anyone can diagnose him or herself with a computer. It's encouraging that this young woman did it with a microscope.
Re:What did they think it was? (Score:5, Insightful)
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Re:What did they think it was? (Score:5, Interesting)
There was an expert system developed some time ago called Mycin [wikipedia.org]. What made Mycin interesting is its high performance rate relative to other subject matter experts. In fact, to the extent to which this area's been pursued lately in academic circles (which is to say, not much; the current hot topics in AI are computer vision, emotion detection, embodied cognition, and robotics), the results have been similar. The expert systems produce results on par with, or superior to, experts in the field.
That said, there's strong pushback in this area from doctors, just as teachers and school administrators are typically opposed to intelligent tutoring systems despite their excellent outcomes. Integration with other systems and the user interface have been issues as well; academic software tends to be of the "stovepipe" variety. There's also a legitimate concern about overreliance on the technology.
It is worth noting, though, that the limited quality (in terms of sensitivity and specificity) of medical information means that the expert system actually needs to be relatively complex. You don't want the expert system to return thousands of equal probability diagnoses, or alternatively to leap to the wrong conclusion based on sparse data.
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Not quite as easy as it seems (Score:5, Informative)
Maybe you guys instantly thought Crohn's, but there are plenty of other rarer diseases it could have been. Without a positive biopsy it would have been incredibly immoral to slap a Crohn's diagnosis on this girl and medicated her for it. It would have proved interesting were she have had say tropic sprue [wikipedia.org] and you were to treat her with the immunosupressants.
Re:Not quite as easy as it seems (Score:5, Informative)
"...slides her pathologist had said were completely normal..."
So to me it sounds like the doctors missed it if she could find it on those slides.
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Re:Not quite as easy as it seems (Score:5, Interesting)
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Re:Not quite as easy as it seems (Score:5, Insightful)
Yes, I've acknowledged that - as I said the pathologist will have been presented with many many samples, turned into slides, looking for a few, if any, granulomata, which are tiny in size. I even said "Now do you start to see why a pathologist may miss it?" It is very hard, if not impossible, to scan every single slide in its entirity, for a granuloma. Fortunately this girl found it, when the pathologist didn't. Props to her,
Absolutely. Agreed.
We must remember that, unlike computers that are often highly deterministic, biology is often non-deterministic, and any given test has a certain rate of accuracy that is rarely 100%. Any given test especially includes ones where there's a human who must interpret observations. Unlike with computers, false positive and negative rates on biological tests are rarely zero.
Jessica had a false negative on an intestinal biopsy for a test that has a poor false negative rate. Not a big deal.
Also, recall that Jessica is far more highly motivated to look for long times at her slides than a pathologist is. A pathologist cannot afford to spend hours gazing at slides, but a high school student can. Not surprising at all, then, that a difficult-to-detect granuloma would, at some point in modern human history, be detecetd by a student and not a pathologist.
This is an interesting story because of initiative shown by the student, but not a very provocative one because of implied medical ineptitude.
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Re:Not quite as easy as it seems (Score:5, Insightful)
And I find your example a bit hard to swallow - sorry the nurse shouldn't be TOLD the drugs, she should read them from the drug chart, to eliminate human error. Also, you imply that if he had used the right name then the nurse would have spotted the drug interaction? No, sorry, no nurse in the world will argue with a specialist about drug interactions - doctors and nurses are incredibly important in patient care, and they fulfil completely different roles - the nurses role is NOT to spot drug interactions, they are not taught about them, and the doctor knows best about these things. Similarly, I wouldn't expect the doctor to tell the nurse how to do aspects of her job.
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This does not surprise me at all. (Score:5, Insightful)
I took her to our local GP who actually admitted that he didn't know what it was, BUT STIIL PRESCRIBED a topical steroidal cream (which did absolutely nothing to cure the problem). A week later, with even more spreading, I returned to the same doctor, and he again admitted he didn't know what it was, and this time prescribed some kind of internal anti-biotic. At that point I asked him, If you don't know what it is, WTF are you doing prescribing medication, and why don't you recommend a specialist. At which point I took my daughter by the hand and walked out the door.
The next morning I was sitting in another GPs office, waiting for him to arrive, and as he walked in the door, he took one look at my daughter, whom he had never met before, and said, "Oh, you poor little girl, you've got impetigo, well, let's get you looked at, and we get that cleared up in a jiffy."
Moral of the story: most diseases are actually well known - if you find a competent doctor. Unfortunately, most doctors are incompetent. Impetigo is an amazingly common problem especially for children of primary school age. For any GP to not have recognized the symptoms is simply an indictment of the complete lack of competence.
As long as the medical community continues to hide the fact that 90% of their job is to memorize symptoms, and accept payola from pharma companies for generating prescriptions , and prescribe medication unnecessarily I will continue to treat them like scum sucking lawyers, used car salesman.
Re:This does not surprise me at all. (Score:5, Funny)
most doctors are incompetent
1. Most people are incompetent. ...
2. All doctors are people.
4. SOCRATES IS A MAN!
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Not surprising (Score:5, Insightful)
This is not at all surprising to me, although most people would look at me funny for saying so.
If you are:
1. Smart (she is in AP science class)
2. Motivated (you are if you have an illness - it sucks; this is powerful and sustaining motivation)
3. Can spend as many hours of your spare time as it takes. This could be 10-1000+ hours.
4. Are willing to experiment.
5. Live in the internet age...
You can often diagnose and solve your own problems.
The key is to realize that:
1. The info is out there on the internet... somewhere. Probably on a forum, newsgroup post, whatever. (Chances are very high that someone has the exact same problem as you, and has written about it. You just have to figure out what combination of words are on that page and not on others.)
2. Although the signal to noise ratio is not great, if you are smart enough you will eventually learn to filter the noise and retain signal.
3. You may go down a wrong path, but since you are doing a type of extensive depth first search (but since you give up on non-promising leads by using your intelligence, you will eventually hit all the breadth), the search will start to approximate exhaustive.
4. In combination with 3, because you are experimenting, you learn when to curtail one of your search lines and try another.
5. Because you are smart, you will learn when one of your search lines fails but yields a clue to success, and because you are persistent you will get closer to a solution.
Thus, an exhaustive search will very often find the answer. The key enabler of all this, the "intelligence multiplier", is the internet.
Contrast this with a typical expert, such as a doctor. A doctor has 20 minutes to diagnose your problem, and has to remember something he studied for maybe half a day twenty years ago (if at all), in combination with the limited number of patients he has has both seen and successfully diagnosed in his life (compared to the vast collective experience of the internet). He can bill another N clients $$$ for another 20 minutes, or he can research your problem in his spare time. Guess what he usually does? He didn't make it through 90+ hours of internships etc. for the fun of it or to "help people" (maybe 1 in 100). He has student loans to pay off, a current model BMW, a trophy wife or girlfriend, a house in the best suburb, expensive wines to drink, classmates to impress at the reunion, and he has to start at age 30 or so.
And if you get a second opinion from someone who DOES diagnose your problem, does he get the feedback? Does he see your medical records from your new doctor? Usually not.
Another thing to realize with doctors is that many (of course, not all) of the people who go into medicine are not natural problem solvers. They are reasonably smart people who have good memories, good English skills, can cram well, and want the lifestyle that goes with being a doctor. A natural engineer by contrast, is better at diagnosis - figuring out what is wrong and fixing it. But often a good engineer will want to do engineering and not medicine. Note that I'm not saying that great doctors aren't out there. They are. But even the best doctors don't have expertise in all areas.
Some times you need to be your own advocate (Score:5, Interesting)
The answer was http://en.wikipedia.org/wiki/Schistosomiasis [wikipedia.org], which I contracted as a young child. It ruined my life, for sure. The trouble is, if you ask any doctor here in the US they will tell you it does not even exist here, only in west Africa and South America. I've never even been anywhere near there, or outside the country at the time at which I contracted it. If you have ever been labelled with IBS but have other symptoms as well then you might want to read the above wikipedia article.
Because the doctors are not aware of the disease, they do not diagnose it.
Because doctors do not diagnose it, they do not collect any statistics.
Because the disease is statistically insignificant, the medical schools do not teach much, if any, about it.
Therefore the doctors don't know about it.
Anyone see a problem with this situation?
What really hurts is that when it really started affecting my health my primary care physician at the time was an EXPERT in those diseases, and she just blew me off because it would bee too hard to think, or to send me for actual tests of some kind. You would never know her ineptitude by looking at her wall of certification she earned in medical school in west Africa. Of all doctors, including at least three infectious disease specialists, this one completely boggles my mind how she could have missed this diagnosis!
After 37+ years of damage it took my buying my own 1600x stereo microscope mounted with a CCD camera to collect some indisputable evidence, one day to use it, one doctor visit to present my case, three days just to find a source in the US to fill the prescription, and only 24 hours to actually cure it. The damage was done, and nothing can ever give me back my health, or a normal life for that matter. The real kicker is my dog gets that exact same 'cure' every month, but it took me three days to find a supplier for a 'human' prescription for the exact same drug. All I can say is at least my dog has someone that actually cares about his health!
Re:One more such case,...me (Score:5, Funny)
Never having had any medical schooling but with a little engineering background I made some changes to the protocol for the operation
Sentences like this usually have "duct tape" somewhere in them.
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The article says they had been taken for pathology (Score:5, Informative)
"she was looking under the microscope at slides of her own intestinal tissue -- slides her pathologist had said were completely normal"
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