Letters to the Editor
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Web can be an important resource
I agree that the web can be an important source of medical information for patients, and also that it takes some vigilance to filter out what's reputable.
I'm pregnant, and there is no way that my OB has time to tell me everything I need to know. I was given a binder with a lot of pregnancy info; the couple of books I bought have several times as much information as the binder; and the web has been essential for supplementing, especially for figuring out what over-the-counter medications, herbal teas, etc. I should avoid. But I have found a wide range of advice, including contradictory advice, and the conclusions I've drawn by being someone who is reluctant to take anything that might be dangerous, unless it has appreciable benefits, are very different from those someone else might draw. And I have training in epidemiology and health research, so I'm able to find & judge information more readily than some patients. So, it's complicated, but I'm definitely very glad for the web. And it would be great if doctors would refer patients to good websites, much as I was given a binder at my first prenatal visit and used to be given handouts on calcium supplements and other things from my PCP.
Like others, I have had attempts at self-diagnosis lead to catastrophic diagnoses, which I ignored. But I've also been able to say "oh good, the fact that I have a runny nose means this sore throat is really unlikely to be strep." And searching the web to figure out what symptoms could mean has allowed me to do a better job of emailing my doctor to ask her questions, because I know what symptoms might be relevant, and I can tell her "I have this and this, but it's kind-of like this, and I don't have that, should I come in?" Without the web to guide me I would have a much harder time giving her enough information to go on.
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If the doctors were doing their job, patients wouldn't need to turn elsewhere
When my mother wrenched her back, she discovered that she had a doctor who never spent more than a minute or two listening to her describe her symptoms, had no idea what other medications she was taking, and whose primary goal was getting her out of his office. (she never had any need of this doctor before the back problem, so she had no idea just how bad he was). So where was she supposed to turn for information? Her doctor wouldn't return her calls or answer questions. She was "locked in" to this doctor by her health insurance plan. He would not refer her to any specialists, either. He just kept prescribing medications, and then more medications to deal with the side effects, and then more and more, until my mother was experiencing dissociative episodes and critically low sodium levels (which people die from). Mind you, this is someone whose only medical problem to begin with was a wrenched back.
If doctors actually did their own research, and spent more than a second actually thinking about the patient in front of them rather than their pockets, their other patients, or their tennis game, patients wouldn't need to go online to research their conditions. When I went online, I looked up the first medication he prescribed for her back. It was known to cause the side effects that it actually caused, and it was counterindicated for people like my mother. Why did he prescribe it? Because he didn't even know her, and didn't care what he was doing to her. At least on the Internet, one can find people who care.
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Yep, Web is Helpful
Thank you for this timely post. I had an unusual problem called biliary dykinesia, a dysfunctional gallbladder, that was not misdiagnosed but diagnosed as me having lost my mind. The only thing that kept me going through a year of severe abdominal discomfort and a drastic weight loss, along with rebuff after rebuff from both my Primary Care Physician and then a GI specialist was my Googling of the symptoms I was having. The symptoms were classic for this disorder, but nobody would order the test because they claimed it produced too many false positives or wasn't reliable. Yes, the test, a Hida Scan with CCK injection is not ideal, but it is all they had. When I finally got the test because an Urgent care appointment found me in front of a doctor who took pity on me, mind you I still got the lecture about how it was al in my head or probably my colon, I found out that my gallbladder was basically a piece of shoe leather and was DOA. The only reason I pressed on was because every time I Googled the symptoms I could find a forum where some poor person had gone through what I went through. It is not a common condition, most people have stones, so I would not have met someone else in my neighborhood or sphere who would have likely had these symptoms, it was these far flung folks I found on the internet who re-assured me I wasn't in fact losing my mind. In the end, I learned to trust my instincts and to press on in the face of discouragement and that yes the internet can be a useful resource. I do agree with the author, it is important to use reliable resources and good common sense and if you are not familiar with medical terms a Medical Dictionary as well. Oh, and full disclosure I am a happy Kaiser patient who no longer has a gallbladder and feels much better.
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Going online got me off prednisone
I have chronic autoimmune problems and I was on prednisone for four years. It was awful. Prednisone made me fat, crazy and stupid and other bad things as well. It's a horrible medicine but I wasn't able to live without it.
Then I researched online and discovered a lot of interesting things that my doctor hadn't had time to discover on his own.
At that time I was drinking a lot of tea and eating a lot of soy and flax and bathing in lavender and getting manicures with nail polish that contained phthalates.
Turns out that my particular illness is estrogen-sensitive, as many seem to be. And there I was, saturating myself with plant and chemical sources of estrogen.
I figured out that the soy, flax, lavender and phthalates were triggering flareups. The tea also, because as it turns out, ordinary black or green tea contains an enzyme that makes your T cells produce more interferon than normal. It's not good to overproduce interferon if you have an autoimmune problem.
I was able to go off steroids and take a much milder, safer medicine once I changed my diet and my bath products and stopped wearing nail polish.
I wrote up all my findings for my doctor. He's impressed, not angry, because now I'm off prednisone and that's a good thing.