8:10pm September 18, 2014

Rant #1: Literature to Practice Inconsistency in Medicine

chronicillnessproblems:

you know what really gets me? you read all these pubmed studies from doctors, doctors you’re going to see, and there are always lines about EDS patients like

“it should not be underestimated how hypermobile these patients are,”

“extra care should always be taken in surgery or invasive procedures because of various fragilities,"

"high risk of complications in procedures or dangerous side effects to medications that are more common in these patients should be taken into consideration."

And then you go see these doctors WHO WROTE THAT LITERATURE, and they’re like

"Are you sure you’re having dislocations? Maybe it’s just regular joint pain?”

"oh you’ll be fine we don’t need to worry with this procedure”

"Nah, side effects with this are rare, I’m sure you’ll be fine.” *proceeds to think you’re making it up when you complain about side effects*

Like these people are supposed to be at least reasonably intelligent, do they really not see a problem with this?!

I did this once.

Though technically the doctor in question didn’t take patients so I just went to their practice that they worked at.

I went in for erythromelagia and the doctor poked me with a sewing pin and whacked me with a tuning fork a couple times. He then focused on treating my migraines and blood pressure for 2-3 visits then decided I had fibro and told me to come back if “anything changed” even though nothing had been attempted to treat the thing I came in for.

I don’t have fibro I have mitochondrial disease. Despite the blood pressure focus the doctor failed to notice that both the blood pressure and the erythromelagia are symptoms of autonomic dysfunction.

This was a highly regarded neurologist from one of the best hospitals in the country.

I don’t get my hopes up for any doctor knowing what they are doing anymore.

Yeah I saw a specialist for a condition that I absolutely have, like I have very clear test results, and he spent the entire visit telling me why I probably just looked like I had this condition because I had two other conditions that could cause the same symptoms. (Except that treating those conditions didn’t treat the symptoms, which we already knew, and except that I tested positive for the actual condition in question, which we also already knew, but which he disregarded for reasons that are like… in the literature as not reasons that you ever disregard the test results. Like he literally didn’t know the basic literature on how to read the test in question in a certain circumstance, so he insisted on misreading the test in a way that like… a rookie wouldn’t.

And this was supposed to be a serious expert, not just a specialist. It completely deflated my expectations of medical experts, like he didn’t even barely talk to me, he didn’t read my file beforehand, he didn’t read my doctor’s letters to him, in fact he insisted my doctor hadn’t written letters to him, and he barely asked me any questions, including questions that would’ve revealed that he was wrong about the assumptions he was making. And these were basic basic questions that anyone evaluating for the condition would ask, and in fact other doctors much less renowned than him had asked and actually listened to the answers. He just really didn’t impress me as even paying attention, it was like he hadn’t had his coffee or something. I mean everyone has off days but when so much is riding on something, it’s important not to have that off a day. He wrote kind of a generic letter of generic recommendations to my doctor and we’ve made use of that but we both decided there was no reason for me to see this guy again.

Notes: