Looking For A Neurologist: What We Need From Our Doctors

“Hi! Glad to meet you! I’m Doctor Smith.”

I was in the office of my latest neurologist. I’ve done a fair bit of moving in the last thirty years, and the very first thing I have to do when I move anywhere is set up my doctors. I have to have my medications, and so I need a local prescriber. Neurologists aren’t common in all areas of the country (I haven’t always lived near a big city), and it usually takes a while before you can get an appointment. Finding a neuro has usually been the second thing I do when I move anywhere, right after finding an apartment.

So there I was in Doctor Smith’s office in northern Michigan. He certainly seemed interested, attentive, competent; everything I wanted my specialist to be. But I had seen three or four neurologists in the previous six years. I was used to them being good at what they did. At that moment, I just wanted to get my prescriptions and get out feeling reassured that somebody knew who I was, what was going on with me, and what should be done if there were a problem. There wasn’t anyone else who fit that description for six hundred odd miles.

Home was here. Family was way down here.

A brief introduction, then “I have epilepsy. It was diagnosed six years ago at the University of Chicago. I’ve been having a few seizures a year, on average.”

“Oh? Well, let’s see.” So, he’s going to see whether I have epilepsy? This should be interesting. The standard approach to deciding whether someone has epilepsy, short of documenting multiple seizures, is detecting “epileptiform activity” on an EEG.

This stuff.

But most individual-practice neurologists don’t have an EEG in their office; they outsource it to a lab. Doctor Smith started in on what I’d come to think of as “the usual routine”.

“Stand up. Close your eyes. Put your arms out in front of you. Touch your nose with your left hand. Now your right hand.” And on. And On. And ON. Finally after an hour (an HOUR!!!):

“Well, I think we can say that you have epilepsy.”

Oh really, Doctor? It took sixty minutes of testing, using a test that can’t actually tell whether there’s seizure activity in my brain, for you to agree with something that I already told you an hour ago?

Look, neurologists are good people. They’re really important to us. I mean Really Important. Some of them are even epileptologists, specialists in epilepsy. (If you come across one of these guys, don’t give them up. They’re ACE.) But calling all neuros: I’m an adult. I know what’s going on with my body. Can we at least start with the assumption that I know I have epilepsy? Don’t look down on me. Work with me. I can help you help me. That’ll do both of us good.

And that goes for all you guys too. I love you!

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