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Teen Diagnoses Her Own Disease In Science Class 582

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."

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Teen Diagnoses Her Own Disease In Science Class

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  • by Anonymous Coward on Friday June 12, 2009 @06:40AM (#28305903)

    ...FIRST person do this?

    • by Anonymous Coward on Friday June 12, 2009 @10:25AM (#28307859)

      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. :)

      • by MMC Monster ( 602931 ) on Friday June 12, 2009 @10:58AM (#28308391)

        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.

        • by Lord Bitman ( 95493 ) on Friday June 12, 2009 @11:31AM (#28308883)

          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.

        • Re: (Score:3, Informative)

          by bwcbwc ( 601780 )

          "If you hear hoofbeats, look for horses, not zebras"
          Unless of course, you live in Africa. Then it could be anything from antelope to wildebeest. Not to mention zebras.

          Statistical medicine is all well and good for making sure you get the best probability of curing the problem on the first shot, but too many doctors seem to get fixated on the initial diagnosis (or lack thereof) and don't continue the investigation for less likely scenarios.

          In the case of the original article, this looks more like a case where

        • by nine-times ( 778537 ) <nine.times@gmail.com> on Friday June 12, 2009 @01:39PM (#28310837) Homepage

          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.

        • Re: (Score:3, Insightful)

          This makes me wonder what a physician's place in the modern world is. Given a set of symptoms a layman can do an internet search and find the most common condition fitting those symptoms, and also find a list of treatments. I guess physicians are supposed to be objective, but you could get a lawyer to do that. The prescribing of drugs could be done by a pharmacist.

          If all you are going to do is apply a statistical model to your patients, you should probably be replaced by a computer.

          I guess surgeons have

      • Re: (Score:3, Interesting)

        by MozeeToby ( 1163751 )

        How many patients routinely find the cause of their illness' before the medical profession does, like this woman did?

        Another good question would be 'how many patients do ten minutes of googling and decide that they have some horrible disease when all they really have is a cold?'. My point is that this cuts both ways.

        There's a reason that doctors use statistics to diagnose patients, it works the majority of the time. Where you get into problems is when people have a difficult to diagnose, chronic disease that isn't immediately life threatening. When you're at the doctor several times a year and several doctors aren't ab

      • Trust me, I've been there. Here's a common scenario from my teenaged years:

        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.
  • by Klistvud ( 1574615 ) on Friday June 12, 2009 @06:45AM (#28305925)
    ...but can't really say which of the multiple personalities established the diagnose. Does this still count as "self-diagnose"?
  • Surprised? (Score:5, Insightful)

    by dov_0 ( 1438253 ) on Friday June 12, 2009 @06:46AM (#28305927)
    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.
    • Re:Surprised? (Score:5, Interesting)

      by Kokuyo ( 549451 ) on Friday June 12, 2009 @06:54AM (#28305999) Journal

      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.

    • Re:Surprised? (Score:4, Interesting)

      by Anonymous Coward on Friday June 12, 2009 @07:00AM (#28306039)

      Meh, I had to diagnose myself as well (Addison's disease) after 5 year of suffering... Constant low blood pressure, hyperkalemia and hypoglycemia, and no doctor ever even thought like "hey, maybe we should do some more tests". I had to friggin ask to test my cortisone levels, they didn't even bother.
      "Yeah well, normal blood tests don't show nothing special, except those potassium and sugar values, but that's nothing to worry about." Not even when those values (elevated/reducted/...) were the same 5 years in a row.

      Really, I've kinda lost my faith in the diagnostic abilities of a lot of doctors

    • Re:Surprised? (Score:5, Insightful)

      by discontinuity ( 792010 ) on Friday June 12, 2009 @07:29AM (#28306203)

      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):

      Many people with Crohn's disease have symptoms for years prior to the diagnosis.[12] The usual onset is between 15 and 30 years of age but can occur at any age.[13] Because of the 'patchy' nature of the gastrointestinal disease and the depth of tissue involvement, initial symptoms can be more vague than with ulcerative colitis. People with Crohn's disease will go through periods of flare-ups and remission.

      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.

      • Re:Surprised? (Score:5, Insightful)

        by ArcherB ( 796902 ) on Friday June 12, 2009 @08:52AM (#28306731) Journal

        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.

        • Re:Surprised? (Score:5, Informative)

          by Mong0 ( 105116 ) on Friday June 12, 2009 @09:39AM (#28307245)

          According to the article her pathologist gave her the slides for the class project.

          • Re: (Score:3, Interesting)

            by Japie_H ( 997237 )
            Wonder how they missed it (granulomas are relatively "easy" to spot). During lectures from pathology they would always show slides and point out a million different things only visible to them!

            That said Crohn's disease is really nasty because it is a transmural (contrary to ulcerative collitis in which "only" the upper layer is inflamed) and can occur throughout the whole digestive tract (from mouth to anus...) Quite a lot of patients need repetitive surgery to remove inflamed intestine.

            As other point
          • Re: (Score:3, Interesting)

            by Taibhsear ( 1286214 )

            According to the article her pathologist gave her the slides for the class project.

            How the hell did she pull that off? I can't even get my dentist to photocopy the xrays of my teeth for me to take home.

      • Re: (Score:3, Interesting)

        Yes. In fact, I know 3 people with Crohn's disease, and it is, in fact, difficult to diagnose. I realize 3 people doesn't make a study, but all 3 were undiagnosed for years, despite each having seen a veritable army of doctors. The problem is that symptom-wise Crohn's disease often looks like a lot of other stuff, like ulcerative colitis, dysteria (and other viruses), lactose intolerance, food allergies, various infections, etc. With the flare-ups as described, it goes like this:

        Patient: I've had diarr

    • Re: (Score:3, Interesting)

      by meyekul ( 1204876 )
      It can be difficult to diagnose. I had an ex who had it, and had been diagnosed for years. She went to a new doctor who ran some tests and they said they couldn't find any trace of Crohns, and tried to re-diagnose her with IBS. Apparently the signs are not persistent, so depending on when the doctors did the test, its possible they could have missed the inflamed tissue and ruled it out early on. Or, they could just be morons.
    • how come it wasn't diagnosed?

      We don't have enough information to know why it wasn't diagnosed. It said that she had the symptoms for 8 years, but it doesn't say how many doctors she saw about them, or where or when. This could just as easily be a communications breakdown as much as a problem with quack doctors; if she changed doctors over the 8 years (which is a common patient reaction when they have undiagnosed problems) then the records might not have followed her completely. For that matter the article doesn't say if the family

    • Re:Surprised? (Score:5, Interesting)

      by rgviza ( 1303161 ) on Friday June 12, 2009 @11:22AM (#28308767)

      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

  • Hmm (Score:5, Interesting)

    by El Lobo ( 994537 ) on Friday June 12, 2009 @06:46AM (#28305929)
    Interesting: while reading about her symptoms, Crohn's Disease was the first think that came to my mind. And no, I'm not a doctor. So what kind of doctors were seeing her? Veterinary ones?
    • Re:Hmm (Score:5, Funny)

      by Rosco P. Coltrane ( 209368 ) on Friday June 12, 2009 @06:53AM (#28305993)

      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.

    • Re:Hmm (Score:4, Interesting)

      by TheRaven64 ( 641858 ) on Friday June 12, 2009 @08:18AM (#28306455) Journal

      So what kind of doctors were seeing her? Veterinary ones?

      Unlikely; they'd probably have diagnosed it quickly. Vets have to have experience with a number of species and with patients who can't describe their symptoms. It used to be the case (not sure if it still is) that vets were allowed to practice as doctors without additional certification, while the reverse was not true due to the extra breadth of their training.

    • Re:Hmm (Score:5, Insightful)

      by hey! ( 33014 ) on Friday June 12, 2009 @09:03AM (#28306861) Homepage Journal

      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.

      • Re:Hmm (Score:5, Insightful)

        by kraada ( 300650 ) on Friday June 12, 2009 @10:12AM (#28307641)

        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.

  • Health Care (Score:5, Funny)

    by schmaustech ( 766915 ) on Friday June 12, 2009 @06:47AM (#28305935)
    The story points out how our health care system is like the Geek Squad: poor troubleshooting. In the end the client has to figure out their problem.
    • Re: (Score:3, Funny)

      by dangitman ( 862676 )

      The story points out how our health care system is like the Geek Squad: poor troubleshooting. In the end the client has to figure out their problem.

      Well, I wouldn't trust any of my systems, electronic or biological, to a group of people primarily employed to bite the heads off chickens.

    • Re: (Score:3, Funny)

      by Thanshin ( 1188877 )

      The story points out how our health care system is like the Geek Squad: poor troubleshooting. In the end the client has to figure out their problem.

      "I've got a brainsplitting headache"
      "Have you tried switching it off and on again?"

  • by AussieSlasher ( 1571731 ) on Friday June 12, 2009 @06:47AM (#28305937)
    I thought this was a joke when I first read it. Crohn's disease is actually quite a common ailment so I cant believe no doctor diagnosed this. Where did she get a sample of her own intestinal tissue? I mean seriously...
  • So what (Score:5, Funny)

    by Rosco P. Coltrane ( 209368 ) on Friday June 12, 2009 @06:48AM (#28305941)

    I diagnoezd my own disleksya at skool yeers ago. Since zen I'v goten a lott beter.

  • by tygerstripes ( 832644 ) on Friday June 12, 2009 @06:49AM (#28305943)
    For eight years her doctors were unable to diagnose Crohn's Disease? Shit, that's appalling. It's not exactly an obscure condition requiring House MD's staggering intellect, is it? It's been known about for at least a century, and while it's known to be difficult to diagnose with certainty, you'd think someone would have considered it...
    Still, kudos to her.
  • by kenh ( 9056 ) on Friday June 12, 2009 @06:49AM (#28305951) Homepage Journal

    While looking under a microscope at slides of her own intestinal tissue in her AP science class

    • Re: (Score:3, Informative)

      by filtersweep ( 415712 )
      Either a fecal smear, or from her own testing at the doctor. You decide.
    • by Cougem ( 734635 ) on Friday June 12, 2009 @07:26AM (#28306187)
      She obviously just requested her own tissues, RTFA

      "she was looking under the microscope at slides of her own intestinal tissue -- slides her pathologist had said were completely normal"
    • Re: (Score:3, Insightful)

      by pz ( 113803 )

      While looking under a microscope at slides of her own intestinal tissue in her AP science class

      That's what I wondered as well, until I read the article:

      In her Advanced Placement high school science class, she was looking under the microscope at slides of her own intestinal tissue -- slides her pathologist had said were completely normal -- and spotted an area of inflamed tissue called a granuloma, a clear indication that she had Crohn's disease.

      The logical inference is that some doctor had suspected Crohn's, ordered a biopsy (which, for intestinal tissue, is a non-trivial procedure) and had slides made up for pathological evaluation. Somehow young Jessica managed to get the slides, probably because she had good relationships with the doctor and pathologist on the case. She even had (or was able to discover) the email address of the pathologist so as to send him an image from the slide.

      I'm

      • Re: (Score:3, Interesting)

        by russotto ( 537200 )

        The logical inference is that some doctor had suspected Crohn's, ordered a biopsy (which, for intestinal tissue, is a non-trivial procedure) and had slides made up for pathological evaluation. Somehow young Jessica managed to get the slides, probably because she had good relationships with the doctor and pathologist on the case. She even had (or was able to discover) the email address of the pathologist so as to send him an image from the slide.

        I'm thinking the story isn't quite one of such significant medi

  • by richardcavell ( 694686 ) <richardcavell@mail.com> on Friday June 12, 2009 @06:51AM (#28305973) Journal
    The original CNN story mentions that sometimes a fresh pair of eyes can spot something that the first pair didn't see. Coders and authors will be familiar with the idea. Sometimes you've looked over something and worked on it so much that you can no longer analyse it from the beginning, and it takes someone else to verify one's work. That's why nurses aren't allowed to dispense medicine unless they get another nurse to check that they have selected the right medicine and the right dose and the right patient. 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
  • I wonder... (Score:4, Funny)

    by teh.f4ll3n ( 1351611 ) on Friday June 12, 2009 @06:54AM (#28305995) Journal
    ... if she now gets sued for "stealing" from "Private Doctor Association of America" (I'm sure there is one) by diagnosing her own self and not by paying a doctor to do it? Even though she did visit a pathologist.
  • by Chysn ( 898420 ) on Friday June 12, 2009 @06:55AM (#28306013)

    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.

    • by TheRaven64 ( 641858 ) on Friday June 12, 2009 @08:36AM (#28306591) Journal
      It makes you realise what a waste of time most medical training is. We expect medical students to spend a massive amount of time and effort memorising lists of symptoms for particular diseases, when a relatively simple expert system could give them this information more accurately. Spending those seven years focussing more on their deductive reasoning and communication skills, rather than memorisation, would likely produce much better doctors.
      • by FreelanceWizard ( 889712 ) on Friday June 12, 2009 @11:01AM (#28308443) Homepage

        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.

  • by Cougem ( 734635 ) on Friday June 12, 2009 @07:00AM (#28306037)
    In a year's time I will be a doctor, and have just spent a year learning about pathology, so I thought I'd put my view forward. The interesting thing about Crohn's disease, in contrast to the other big type of inflammatory bowel disease (Ulcerative colitis) is that it is characterised by skip lesions. The disease is not confluent over the entire gut, in fact it can be anywhere from mouth to anus, in small patches. Now do you start to see why a pathologist may miss it? They will have taken many specimens from the girl's GI tract, and if this is the only sample with a granuloma, then it's not too unforgiveable that a patch of cells only around 30 cells-wide [pathguy.com] is miss. Yes, it sucks, but pathology is actually a fairly bloody hard speciality, with an very vigorous set of examinations [rcpath.org], at least in the UK, so don't imply that these pathologists don't know what Crohn's is. Life isn't black and white, and medicine is just the same.

    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: (Score:3, Insightful)

      by kidgenius ( 704962 )
      Here's what I'm thinking probably happened. She probably was taken to a doctor a few times when it first happened years ago, and it was attributed to something she ate, stress, etc. So the doctor(s) probably didn't order any kind of tests done. Then, after a while, she just stopped going until it was really bad, because her parents figured it was the same thing as before, so why bother paying a doctor. I would think that any doctor that saw her more than a few times would send her to a specialist to get
    • by yabos ( 719499 ) on Friday June 12, 2009 @07:32AM (#28306211)
      Reading the article, it says that she was looking at the exact slides that the doctors said were normal:
      "...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.
      • Re: (Score:3, Insightful)

        by kidgenius ( 704962 )
        I think the writer of the article took some liberties there. These are the "same" slides, in the way that they are slides of her GI tract, not that they were the actual exact same physical slides.
      • by Cougem ( 734635 ) on Friday June 12, 2009 @07:38AM (#28306245)
        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,
        • by pz ( 113803 ) on Friday June 12, 2009 @08:51AM (#28306723) Journal

          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.

        • by forand ( 530402 ) on Friday June 12, 2009 @08:59AM (#28306799) Homepage
          Perhaps doctors should speak with Astronomers about finding needles in hay stacks. It would appear that the problem is with too much information. That is a solvable problem by computers and people. Computers reduce the data and humans decide what is what. That is if a human can see a contrast or pattern difference then just have a computer highlight the regions of each slide which "differ greatly" from the "standard." If you cannot define a "standard" then the problem is clearly much harder than anyone above is making it out to be.
    • Re: (Score:3, Interesting)

      by infinite9 ( 319274 )

      It would have proved interesting were she have had say tropic sprue [wikipedia.org] and you were to treat her with the immunosupressants.

      I take a medication that's used to treat Crohn's disease (Enbrel). It's a shot i self-administer twice a week. I take it for severe plaque psoriasis. It's a freakin miracle drug. Without out, those spots you see on peoples' knees and elbows cover 50% of my skin severely limiting my mobility, lots of cracking and bleeding. During a flair, it feels like a second degree

  • Not the last one (Score:4, Insightful)

    by Krneki ( 1192201 ) on Friday June 12, 2009 @07:12AM (#28306097)
    With the developing of technology and Internet more and more people can diagnose their problems quicker.

    When I was bitten by a tick I diagnosed borreliosis before going to the doctor, by just browsing the Internet. When I visited the doctor I already knew everything I had to do to cure it, still it was nice to get a professional confirmation.

    Get used to it, the more you know, the better you can help yourself.
    • by tsstahl ( 812393 ) on Friday June 12, 2009 @09:29AM (#28307135)

      Get used to it, the more you know, the better you can help yourself.

      Certainly true to a point. Last year I was convinced I had cervical cancer after typing my symptoms into the intertubes.

      In a panic I went to my doctor. I was relieved when he explained that people with a penis generally are immune to cervical cancer. Who knew? :)

      -----

      Point being, an amateur can accurately diagnose a more common issue (i.e. higher odds of occurring), but a professional is better able to pick the zebra out of a herd of horses.

  • Not weird at all (Score:3, Informative)

    by syousef ( 465911 ) on Friday June 12, 2009 @07:17AM (#28306133) Journal

    I live in Australia. Not a 3rd world country, or so we like to think. The standard of medical care here has been on the decline for a long time. I have seen some of it first hand. I won't repeat my first hand accounts here again because the last time I did I got called a liar.

    That's not to say there are no good doctors and that no one cares. They're just few and far between working under a system starved of resources. Wose, the medical profession tends to work against the patient - if you self diagnose you're thought of as a crackpot. As if giving a damn about your own well being makes you a hypochondriac. I fear it's only going to get worse.

  • by OneSmartFellow ( 716217 ) on Friday June 12, 2009 @07:20AM (#28306149)
    When my daughter first started school - many years ago - she caught impetigo. Now, I had had impetigo as a child myself, but I had completely forgotten the symptoms. All I knew was that my daughter had acquired some kind of skin disease, and that it was spreading.

    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.
  • Not surprising (Score:5, Insightful)

    by turing_m ( 1030530 ) on Friday June 12, 2009 @07:40AM (#28306251)

    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.

    • Re:Not surprising (Score:4, Insightful)

      by JDevers ( 83155 ) on Friday June 12, 2009 @11:16AM (#28308687)

      90+ hours of internship? A whole two weeks huh? Try a typical four years of residency with 60-80 hour work weeks. The last year of medical school is often called an internship, but really the definition more fits residency. So instead of the 90 hours you think, it is more like 18,000 hours.

      Also, any doctor worth his license would try to diagnose something and if unable to would at least send one out to a specialist who DOES have significant experience in the area of the issue and if specialist isn't able to diagnose the problem they SHOULD send the person out to a subspecialist if one happens to exist in that area.

  • by jipn4 ( 1367823 ) on Friday June 12, 2009 @07:54AM (#28306319)

    While looking under a microscope at slides of her own intestinal tissue

    Unfortunately, her scientific career was short-lived because she was thrown out of school after she had actually obtained the sample of her own intestinal tissue in class.

  • by hyades1 ( 1149581 ) <hyades1@hotmail.com> on Friday June 12, 2009 @08:42AM (#28306645)

    Is this what they mean by "Private Health Care"?

    • Re:I have to ask... (Score:4, Interesting)

      by OzPhIsH ( 560038 ) on Friday June 12, 2009 @10:34AM (#28308027) Journal
      Frankly, I think self, or at least at home diagnosis, IS the future of health care. Med tech needs to be sold at the consumer level and incorporated into the daily hygienic routine, in a non intrusive way. The bathroom of the future will have diagnosed this problem. After you take your morning piss, or crap in in your space toilet, it will analyze the contents and report back any, uh, interesting findings, proposed causes, solutions, possibly give the option of scheduling an appointment with a doctor, etc.

      Hell, doctors are ALREADY being giving PDAs with diagnosis software based on data mining techniques. Type in the list of symptoms, and let the program compare with a repository of data to kick out a diagnosis. I think we're heading to a point, probably still in the far future, where "doctors" in the traditional meaning are irrelevant. They will probably be needed to perform actual procedures, or to diagnose more complex sets of health issues, but for simple "analysis" of basic or common, health problems, machines in every home will be plenty sufficient, as well as add the benefits of early warning.

      However there will probably be obstacles in the way of moving med tech to a consumer product for self diagnosis in home. Namely various doctors/medical associations that are looking out for their own interests, and busybody government buerocrats seeking to "protect" you from the possibility of self-misdiagnosis while actually protecting the profits of a somewhat marginalized profession.Similar to what we see happening in every industry where tech marginalizes former moneymakers...

      Anyway, good for this girl!

      Now make me a space toilet!
  • by Shag ( 3737 ) on Friday June 12, 2009 @08:56AM (#28306773) Journal

    Seems like she'd make a good doctor. :)

  • by hAckz0r ( 989977 ) on Friday June 12, 2009 @11:01AM (#28308451)
    My hat is off to this individual for being so resourceful at such an early age. I suffered from a parasitic disease for 37 years without any diagnosis, before buying all kinds of lab equipment and discovering the cause myself. The doctors never even tried to diagnose it, and some just labelled me as being a nut case, or something. I saw SO MANY doctors I have lost track, and not one of them really even tried to come up with an explanation, or send me for tests that might have even had a chance at diagnosing the actual problem. Not even so much as a guess. In short, they were incapable of 'thinking outside the box'.

    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!

  • not surprising (Score:3, Interesting)

    by roc97007 ( 608802 ) on Friday June 12, 2009 @01:14PM (#28310447) Journal

    I don't find this surprising at all. Doctor's offices are assembly lines these days. A convenient good for a convenient number. Real life isn't like House -- unless you're a senator, successful diagnosis of obscure problems is unlikely, and probably prohibitively expensive for the patient, even with insurance.

    It would be in our favor to become more educated about how this complicated machine called the body works. I'm not suggesting bizarre treatments only available in third world countries, but a more complete understanding of cause and effect.

    For instance, the most common treatment for back pain is "weaponized" muscle relaxers and pain killers, commonly leading to hopeless addiction. I know of at least two cases (one of them my own) where the true cause of the pain was due to ergonomic issues, and changes in the environment accompanied by proper exercise solved the issue. Doctors are not likely to tell you that. I don't even believe it's something nefarious like kickbacks from the drug companies. It's simply because giving you a prescription frees up an examining room faster than trying to find a cause.

    And then, there is the expense. I had an ailment that was costing me $400 a month in office visits, lab tests and drugs, after insurance. At some point I realized that I wasn't getting $400 worth of relief, and just stopped going. A little research produced alternates that provided 90% of the effect for 5% of the cost.

    We don't have their training, but we do have a much higher regard for our own health than do most doctors, and access via libraries and the net to most of their information. The body is just another machine -- although a very complicated one -- and can be understood by an educated person, at least partially, via research.

    Mind you, if I need surgery I'm going to the hospital. I'm not an idiot. But I stopped taking steroids for eczema, for instance, and switched to Bag Balm, available at the feed store at negligible cost. Works great.

Two can Live as Cheaply as One for Half as Long. -- Howard Kandel

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