Doctors: Patients Diagnosing Themselves w/ da Interwebs

I know we have a few doctors on the board, and I was wondering something the other day when I was leaving my doctor’s office: would you say the internet has made your job easier or more difficult treating patients? I know I’m guilty of it; feeling a pain here or there, and getting on the web and googling my symptoms to see if it’s worth a doctor’s visit.

Do you find that when you’re treating your patients, they’ve already diagnosed (correctly or incorrectly) themselves by researching their symptoms on the internet? Along the lines of, “Hey doc, I know I’ve got lupus*,” and then it turns out it’s something very minor? During our small talk conversations, I’ve asked my doc this, but he danced around it a bit.

I’d be interested in hearing your anecdotes.

*Yeah, I know. It’s never lupus.

As a slight hijack, it might be interesting to hear of tales of patients self-diagnosing and being right (I did this when my gallbladder flared last winter… also diagnosed my own RLS, and my son’s encopresis).

Ah…you’re one of them. :wink:

  1. I’m not a doctor.

  2. It’s kind of amusing when a patient comes in and gives a complete rundown of what his problem is…complete with mispronounced words and pointing to and naming body parts in the wrong places.

I just play along and tell him that we’ve got to get some good x-rays so the doctor can see what he’s talking about.

Heh, I even went to my doctor with a printout of my condition…

I think I was right too – the doc agreed with me, though perhaps he was humouring me, as he recommended no treatment at this stage (the same as my printout had said :D).

I do this to my doctor, except I not only tell him what I have, I tell him what he should prescribe for it. And he does. I guess he figures that I must know what I’m talking about. So far, I haven’t caused myself any major problems doing this, but I think I’m going to stop, and let him be the doctor, before I hurt myself.

I self-diagnosed my sleep paralysis. My parents were concerned when I experienced it for the first time and they thought I had been hallucinating. I was terrified by the experience, so they told my psychologist, who told my GP, who ordered a full head work-up including EEG and MRI to ensure that I didn’t have lingering head trauma from a concussion a few years back. Not one doctor ever brought up sleep paralysis as a possibility.

Then I happened to read about the condition and realized that it was exactly what I had experienced, down to the terror and fear of dying during the experience.

I was pretty pissed that the psych and the GP hadn’t even considered it. I changed psych’s shortly after and I mentioned my experience and the possibility of sleep paralysis and his reaction was simply “Yes, that sounds exactly like sleep paralysis!”

I went to a doctor the day before yesterday with a concern (and a printout!). But I let him do his examination first (including x-rays) and heard his evaluation, and only then (before he prescribed medicine) did I bring up my concern that it could possibly be such and such. He said that based on what he saw, and from my description of the symptoms, that wouldn’t be it. Not only do I want to show the Dr respect, but I want to get the most for my money by hearing his unbiased opinion. But at the end if I felt he was dismissive or (worse yet) unfamiliar with the concern I was bringing up, I wouldn’t have hesitated to seek another doctor’s opinion.

I actually recommend you look it up. Particularly because I found out that doctors are actually encouraged NOT to try to get people off of benzodiazepines, despite knowing the extremely high levels of addiction possible. Just because I take it during a panic attack and like it doesn’t mean you shouldn’t tell me to only use it in emergencies.


I think we’ve all probably diagnosed ourselves correctly at one point or another, whether it’s for a minor cold or some type of obscure nerve/joint/back/rectum condition. I’ve done it too. I guess my question is, what do the doctors think? I mean, they’re the ones who’ve 12+ years of higher education, who am I to spend 30 minutes on the internet, walk into their office and tell them what I have and how to treat it? I design WANs for chrissake. I don’t know nuthin’ about no doctorin’.

The scary thing is, I’ve done the same type of research diagnosing problems with my cars, and have been wrong on more than one occasion.

I always do internet research before I go see a doctor just to see if my doctor knows more than what I can find through Google.

My audiologist basically confirmed what I found out on the internet - that I had tinnitus and high frequency hearing loss, and that there was nothing that could be done except for buying hearing aids.

The only doctor to ever impress me was my therapist. I looked up cognitive behavioral therapy online and figured it wouldn’t work for me, but I went into therapy anyway just to prove myself right. Lucky she proved me wrong.

I followed the instructions on one of those wikihow-like pages and, at the cost of a 27" television, built my own x-ray scanner so I could take images to the doc. I’ve been buying cheap used HDDs on the net so I can save up enough magnets to build a home MRI.

I find these diagnostic tools quite effective. I’m having a few problems with the CAT scan (kitty keeps jumping out of the box), but as soon as I finish this biopsy (if I can keep the liver sample away from kitty) I should have a full report for my next appointment.

Excuse me, I have to go check the back contents of my 'fridge — I think my latest batch of antibiotics is ready.

The following is a message from my cousin who, through job changes and transfers, has never lived in the same city for more than 18 months at a time so the GP never has a chance…

"Well, I went for my yearly about a week before I came here to Yukon and had the routine stuff done, but I had also been doing some research to find out if I could stop taking the warfarin I have been on since the DVT in 2008. What I found out was that I might have Factor V because of the way my blood would not stay in the therapeutic range at all. So, when I went for my physical, I asked the doc to test me for it. She was skeptical, but here we are a month later and bingo, it’s positive.

So, the other tests, the routine ones, came back all whacked. I had the results faxed to me a the hotel and I started researching again. This time, it was the combination of low white blood cells and high uric acid and creatinine that got me thinking it could be lupus and that it was affecting my remaining kidney, so I went to the walk in and asked for a follow-up ANA based on previous tests. And then that came back positive yesterday. It was just a fluke I was back in Whitehorse for more training!

Now I am on the list to see the nephrologist in April. We will see what he has to say about it, but I will probably have to see a rheumatologist too at some point. For now, the only symptom I have is fatigue but I thought it was due to being stressed out about the whole work thing and then having to move again."

I pretty much figured out my Type 2 Diabetes diagnosis was wrong via reading the Internet and Physician’s Desk References. The local docs kept insisting I was Type 2; I kept reading and going “WTF? This doesn’t fit at all.”

My primary care guy is a great doc, but not a diabetes expert (and is the first to admit it). The local endocrinologist I saw simply didn’t shut up long enough to listen to me explain my reactions to medication & reasons why I didn’t feel his diagnosis fit, nor did he look at the records I brought in to back up my suspicions. He couldn’t explain to me why he thought I was Type 2, and seemed offended that I even questioned him.

So back to the books… and back to researching other docs. When I finally went to a diabetes specialist several months later, she took one look at the charts I brought in and my lab tests and said “I’m pretty sure you’re Type 1.” Which is what I’d been thinking all along. A year later, I don’t think there’s any question - I’m being treated as a Type 1 and everything is just hunky dory.

It’s good for patients to be well-informed about their ailments - and it’s always possible that diligent searching will turn up (for example) a newly published paper about a clinical trial or treatment that a busy generalist won’t yet know about.

A big problem is that while there’s a lot of medical information floating around the Internet, a lot of it is incomplete and/or biased. A good example of this is vaccination. If you get steered to antivax sites, including those that bill themselves as being “safety”-minded, you will see claims and anecdotes with references to research studies, carefully cherry-picked to produce an alarming picture that does not reflect reality. Antivax “activist” Jenny McCarthy is proud of her degree from the “University of Google”, which should tell you something.

Or there will be p.r.-heavy releases online about a wonderful new drug or treatment for which the patient wants to get on the bandwagon - while the M.D. is wary of the hype and knowledgeable about placebo effects and risks that won’t be apparent to someone doing a limited search.

Relatively trustworthy sites online include those affiliated with major medical centers (i.e. Mayo Clinic, Sloan-Kettering), the National Institutes of Health, Cochrane Reviews and WebMD. It’s pretty easy to use Pub Med to find articles on the subjects you want - less easy for the casual searcher to determine if the methodology and scope of the published papers (as well as the sorts of journals that print them) make them reliable.

Jackmannii, M.D.

Relevant New York Times articles:
You’re Sick. Now What? Knowledge Is Power. (Sept. 29, 2008)
Logging On for a Second (or Third) Opinion (Sept. 29, 2008)
Pain, a Limp and Winkle Picker’s Disease (Sept. 29, 2008)
Practicing Patients (March 23, 2008)

In fairness, it looks like another self-diagnosis (that a symptom was the result of a new BP medication) was wrong, though I had good reason to believe it at the time. Doc zeroed in on another explanation and while we’re not 100% sure she’s right either, it’s tilting more in that direction. Now we’re disagreeing over the best way to solve that problem. So I can see where a patient who comes in and says “Doctor Google says it’s X” can be a bit of a PITA.

Most of the time, patients who diagnose themselves via the internet have fairly simple conditions that were no great mystery. Most of the rest are so wildly wrong that it’s not too hard to talk them out of it.

The tough ones have convinced themselves of an incorrect diagnosis (or a cause, or a treatment) and absolutely cannot be persuaded otherwise. Usually they’ll end up coming in two or three times and not doing anything I recommend, then going somewhere else when they realize I’m not going to agree with them. So even then it’s rarely a huge problem.

And, of course, sometimes people suggest diagnoses that I wouldn’t have thought of right away that turn out to be correct, or at least reasonable avenues to explore.

So overall, it’s just not a big deal to me, and sometimes it’s helpful. To be fair, though, my patient population is very poor, very rural, and not very educated, so as a group they don’t spend too much time doing research on the internet. If I had a high-strung upper-middle-class practice I might feel differently.

Don’t get me started on this topic. That obstinate doctor wouldn’t even listen to me when I told him about the pains in my ovaries!