Practicing Internet Medicine

[Susan Beausang]

Have you ever showed up for your doctor’s appointment armed with articles you downloaded from the internet?  Did you note your doctor’s reaction?  A roll of the eyes, a muffled sigh, a politely contrived smile.  It doesn’t stop me.  I’m determined to know what questions to ask because I have learned that if I don’t ask, they’re not offering.  My sense is that many doctors idea of the ideal patient is the one that follows doctors orders, no questions asked.

Like when I was “floxed” by Fluoroquinolone antibiotics.  There are an abundance of online articles detailing other patient experiences and adverse reactions to the class of drugs but despite that, my doctor was comfortable insisting over the phone (ie. without seeing me) that I wasn’t one of those patients.  I insisted on an office visit, and once he saw my blown up Achilles tendons, he was quick to acknowledge that I was having an adverse reaction, that I was indeed “floxed.”

Since then, I am a relentless Internet researcher on every medical condition that either comes my way or my friends’ of family members’ ways.  I show up for doctor’s appointments with well-researched questions and insist on non-dismissive answers.  I’m sure I’ve taken it to an extreme but I say, “Fool me once, shame on you, fool me twice, shame on me.”

I was recently diagnosed with a pancreatic cyst - (side branch IPMN, to be specific).  When the rest of America has been sleeping, I’ve been reading every online article and patient story available on the subject.  I’ve had MRI’s, MRCP’s, 3D CT Scans, PET scans, EUS’s - you name it - this cyst has been looked at from every angle and modality possible.  I always insist that the doc fax me the results so I can see them for myself.  I then dive in and try to become my own expert.  There are often foreign terms that sound scary, but with online medical dictionaries at my fingertips, I work through them word-by-word.  I’m clearly in territory that I don’t belong and often causing myself extreme anxiety, but not knowing and trusting others to make decisions for me also makes me anxious .  I feel strongly about the importance of being an informed patient, but without a background in medicine, I realize that I may be misinterpreting the information.

Lesson learned?  All things in moderation - including online patient medical research.  I know that’s a lesson my doctors would approve of.

Do you use online research to inform your discussions with and questions  to your doctor? How does your doctor react?  Have you ever caught or diagnosed something through internet research that your doctor had missed or dismissed?

Susan Beausang, 4Women.com