Rare Disease and thought’s about Internet Searching

One of the funny aspects of having Idiopathic Protein Losing Enteropathy (PLE) were the occasional search results that would take me by surprise.

I’m visually impaired, you see, so reading case studies and other medical literature is kind of difficult for me.


I use window’s magnifier program - an available utility that comes on computers running windows - and I only have the top 2 or 3 inches of the screen that is magnified enough for me to read the text. Whatever I hover the mouse over is magnified in the that 2 or 3 inch display window. I have the magnifier’s setting maxed out.

So, there I would be slowly reading along. I’d get deeply involved in an article and start thinking about getting a particular doctors contact info; only to get to the bottom where I’d discover the article was talking about dogs.


Another situation I’d run into is after getting to the hospital clinic appointment, I’d speak to the doctor using medical terminology. I’d also ask about stuff I’d read in articles and case studies. Additionally, I’d get him/her to explain why my etiology isn’t one thing or another.


I don’t do this so much anymore, but I seem to recall getting the impression that this annoyed the doctor.

Often, however, the doctor would complement me on having a thorough knowledge of what was happening in terms of current treatments, and my ability to explain my condition to medical students practicing their patient interviews.


I have heard some doctors don’t appreciate patients doing internet research. What happens, I’ve heard, is occasionally, some patients jump to conclusions; thinking the worst and believe that because their symptoms fit an illness (like cancer) they think they are going to die.


Still others look on the internet for what their strange illness might be and to end up self-diagnosing themselves with a minor condition. Feeling confident, they sometimes stop seeking professional medical advice only to have an illness that grows out of control.


One thing I’ve tried to keep in mind: Although some doctors are known to make mistakes, and although each doctor’s knowledge is finite (they don’t know everything), they are very well educated I. That said, have tried not to second- guess their judgment.