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Stop Googling Your Symptoms

Posted: Tuesday, August 07, 2007 8:15 AM by Noah Oppenheim

This morning we took a look at CyberChondriacs.  And, yes, that is a completely invented term.  And, no, I have no idea how to spell it.  (One of the perks of working in the media is promoting the deterioration of the English language.)

That all said, it is a very real phenomenon – people searching for medical information online and whipping themselves into a paranoid frenzy.  I know the pitfalls well.

A close family member had a health challenge a couple years back, and I jumped into the world of online medical research with gusto.  I went well beyond traditional resources like WebMD and waded into archives of old journal articles and patient message boards.  I even went so far as to translate sites I found in Russian.  I was obsessed and my research became an addiction.

Experts warn there is a great deal of false and misleading information on the Internet.  That’s true – I learned the hard way that eating a bucket of chocolate pudding doesn’t alleviate a headache. 

But, for me, the outright quackery was far less damaging than the cold, hard, accurate facts.  There is no more devastating statistic than a Survival Rate.  That number rattles around your brain like it’s the solution to an equation that could save your life.  You massage it, you toy with it… “If 75.2% survive, that means 24.8% don’t… and if 24.8% don’t that means almost 1 in 4…” There’s no better, darker way to learn math.

And then there are those lists of symptoms that might mean you have a cold, and might mean you have a brain tumor.  We should really teach certain people the ability to distinguish which outcome is more likely.  We could call it “Medical School.”

When you or someone you love is sick, it can feel like your world has spun out of control.  Learning about the ailment can create the illusion of regaining control, as if being educated about the disease might help you defeat it.  It can’t.  And sometimes a little ignorance really is bliss. 
  

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Why should we trust doctors for our diagnosis and treatment when so many of them are basically accepting "bribes" (ie. expensive dinners out on the town, discounts from retail stores, etc.)from major drug companies?  
my sister was trying to convince her husband that he should go to the hospital and looked up the symptoms of a   heart attack on the american heart association website and it showed the usual signs of a heart attack and it was enough to convince him to go. Thanks to the internet my brother in law is still alive. One of his main arteries was 100% blocked.I would rather be a cyberchondriac than a caveman.

At a time when all the incentives for doctors are to get us in and out fast, preferably with a costly new prescription that a drug company will reward them for writing, the internet may be our only hope for comprehensive understanding of our own medical situations.  

My worst health conditions have been caused and perpetuated by physician ignorance and lack of time and attention to my symptoms and effects of treatments prescribed for me.  I am now facing skull neurosurgery as a direct result of iatrogenic (doctor caused) Cushing's disease. In my case, the treatment was/is worse than the initial disease was/is.

When an acquaintance was in NYCs finest hospitals with anaphylaxis for 3 months, it was only after I typed her 3 top symptoms into Medline that her diagnosis was found, by ME, allowing her to begin a search for the appropriate experts and life saving treatment.  

When I developed severe symptoms that all my docs had ignored the development of for many years, my internet search turned up the information that ultimately revealed that I was in an adrenal crisis induced by a medication I'd been on for a year, and that I had iatrogenic (physician caused) Cushing's syndrome, a debilitating pituitary/adrenal disease.

Thank goodness for the internet and the national library of medicine archives on Medline.  I despair for those who *don't* use it to defend themselves against physician ignorance and a medical system bought and controlled by drug manufacturers and insurers, with physicians rushing to get as many of us in and out of their offices as quickly as possible, with no time to think about old fashioned clinical evaluation and case management.

Not one of my doctors is familiar with many of the effects and adverse reactions associated with the drugs they prescribe, or the best way to test for complex medical conditions.  

I make sure I am, for me and for my loved ones.  If nothing else, it helps me to evaluate the quality of care I'm receiving.

You should have had a counterpoint to your  patronizing, condescending, story.  The truth is far more interesting than the thoughtless, dismissive piece you tossed off without careful analysis today.

I hope you'll carefully research and air a follow up to this story, which was a glib disservice to health consumers everywhere.
I have had a illness for over a year and my doctor has referred me to another and another. I did some research and found that my diet has alot to due with my illness. After changing my diet I feel better, lets not mention the money I have lost in going to 6 differnet doctors. If I can save a buck in researching- I'm all for it!! I would rather be called a Cyberchondriac.
When Ann Curry asked Matt if he could smell the lava when he walked along a vulcano's edge, I think she was talking perhaps about a sulfuric odor in the air. This was a very logical question.  Matt's making fun of her and pretending to put his face in the lava to sniff was insulting, an attempt to belittle. Hope Matt wasn't trying to amuse the 2 young women he sat beside. Al contributed by snickering. Ann Curry is the most engaging personality on the show. I resent her being ridiculed for her remarks.
There seems to be a developing lack of civility on the Today Show. Like the other day when the small tennis player was trying to demonstrate his skills with Meredith as a partner. I didn't think it was amusing when Meredith struck the tiny tennis player in the head a couple of times with her serve and then as the segment ended said something like "I didn't think I would do such a good job." She should have pologized for striking the child.
If I had not researched my own symptoms, I would be an invalid today--with no disability payments. The doctors wouldn't listen until I wrote a 10-page paper connecting what I had found to comments and tests from previous doctors. After all that, I still had to manage my illness without them because none of the "professionals" in this area knew what to do.
Foolish article,
I am sure it makes Doctors lives more difficult to sort through the information that has been acquired and may be influencing the symptoms. If the research is done in a sensible fashion with some critical thinking (ie: not eating a bucket of pudding for a headache...), then the perfusion of medical knowledge into the public consciousness is only a good thing. I can't wait until Science or Nature is sold in place of the despicable garbage which lines the checkout lanes at grocery stores. If this is a piece on being wary of spin, then perhaps you focus more on your news corporation, Yahoo fudging search results for money, or Fox sensationalist news.  
I am intelligent enough to understand that there is a portion of the population that probably does "go over board" with internet diagnosis.  BUT . . . . being an intelligent person and searching the internet is the only way I found out about my disease.  I had cushings disease, a very rarely diagnosed endocrine problem caused by a tumor on the pituitary gland.  It took me almost 5 years to ever get a doctor to "believe" that I was really sick.  You see some of the symptoms of cushings are being overweight, acne, red face, can't sleep at night, high blood pressure, and diabetes.

I did not get help until I took it upon myself to get every test result ever run on me and search the internet.  That is when I found that too much cortisol and ACTH indicated cushings disease.  Then with the help of the internet I found a cushings specialist.  It was then that my disease was taken seriously and I was treated by attempted removal of the tumor.

Please don't discourage individuals from searching and understanding what is wrong with them.  Had I not became my own doctor I would have surely died from the effects of my disease.
As a future medical librarian, I found this segment rather frustrating. I feel that there were no useful resources suggested. The tape showed a mother searching using Google and the doctor interviewed only mentioned university websites in passing. It is true that the most important thing in finding health information is reliability. Why not then suggest reliable websites? The National Library of Medicine's website http://medlineplus.gov is one of the most highly recommended websites for online health information. Now that might be something worth sharing!
Not all doctors are created equal.  The average patient with Cushing's Syndrome/disease is dismissed by 7-10 doctors over the course of many many years. I fly from Rural Kansas to Seattle to undergo testing for this rare and complicated disease, my Neuroendocrinologist feels that my suspisions were right on target, too bad not one of the 8 doctors I've seen over the last 6 years knew how to use the internet.  


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