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Medical Adventures and Misdiagnosis

 [I am repurposing my comment response to LStrom’s blogpost on Going to the Doctor.]

So, as I mentioned during the book report session, I spent about the past 3.5 years (January 2013) thinking that it was 95% likely that I have MS, due to MRIs, blood work, and office exams with Neurologist #1. I came to discover in Fall 2015 that Neuro #1 was, basically, an idiot that paid 0% attention to ANYTHING I said during an office visit. I figured this out after he prescribed medication 3 or 4 to treat my separate migraine issue. We were on 3 or 4 because the first few had horrible side effects that made my peripheral neuropathy stuff turn up from happening a lot during the day to being a constant part of my waking life. The pharmacist is the one who pointed out all of the latest med’s side-effects, saying that if these were what I had been trying to avoid by switching, it was likely to only continue OR BECOME WORSE.

I then sought out Neuro #2. Part of doing that was getting Neuro #1’s office notes. He wrote things such as “Patient denies X,Y, Z, A,B….” you get the idea. But nearly all of those things he wrote that I “denied” as symptoms were things I specifically brought up and mentioned as being issues. I know this, because I eventually ended up bringing my own spouse to at least two appointments to make sure that I was saying the things out loud that I thought I was saying.

 

That blatant lying about my symptoms still angers me even as I write this.

 

Long story short, Neuro #2 listened to my symptoms, called their “colleague” an idiot, and said they weren’t sure what it was I have, because it wasn’t presenting classically for anything. So they sent me to Duke Neurology, because “they do the weird stuff”. This summer, they ran a bunch of extra tests and did more blood work. A week later, I get a note from the doctor basically telling me that bread is poison, and I need to see a gastroenterologist.

September rolls around, and I’m being tested for celiac….by a doctor with celiac. It was amazing what that personal connection did for my feelings of comfort.

 

This was someone who actually empathized with my situation. I was nearly in tears because I felt like I hadn’t been listened to for multiple years, and now, it was happening. Someone listened to what I was saying, and believed me. That’s part of the power of the listening exercises we’ve done in this course.

 

However, this also relates to the stories we’ve heard about in Flint. How people were being diagnosed with contact dermatitis, eczema, or scabies instead of lead poisoning. I have such empathy for what the people in Flint have gone through, medically and financially, because of my experience. One of the deciding factors, for me, in coming to Virginia Tech was the cost and availability of their graduate student health insurance. I know that without that, right now I would be probably still be without any clear answers or treatments. I also know that without this insurance coverage, I would be medically bankrupt.

 

It is just flat out infuriating and frustrating to discover (after spending upwards of thousands of dollars) that the medical experts are wrong. Over and over again, they can be wrong. And a lot of the time, it’s not because they needed to be like Dr. House, and consider statistically improbable causes. It’s because they simply don’t have enough time or empathy to listen to us, their patients.

 

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