My beloved neurologist recently moved to Florida. How did I love him? I shall count the ways. I loved his quietly avuncular nature. I loved that appointments with him lasted a full hour, leaving plenty of room for “oh yes! I’ve been meaning to ask . . . ” queries that never made it to the list I always brought with me. I loved his one-two punch of experience and openness to new treatments. I loved that he took an interest in my life beyond my disease and gave me small glimpses into his. I especially loved that he sent me to the wonderful Dr. B, who calms my head tremors with Botox. And, most importantly, I loved that changed my DMT (disease-modifying therapy) to something that has prevented new brain lesions for six years.
Each time I have changed neurologists the results have been good. The kind and quiet Dr. W passed me on to Dr. C, whose fondness for Shakespeare gave us an entryway to rapport, making it easier to discuss excretory mishaps and other concerns. I left him for the recently departed (from DC) Dr. M in the name of getting more specialized care. His warmth and good humor were welcome bonuses.
So when Dr. M announced he was leaving, I was crestfallen but cautiously optimistic. Perhaps a new neurologist would bring new ideas. Unconventional approaches. Maybe even a prescription for the massages I invest thousands of dollars in each year. This could be great!
I went into my first appointment with Dr. A like I do most nervousness-inspiring situations, with a big smile and a tendency to talk even more than usual. I wanted her to like me, to see I’m not the average patient. I am good natured and funny! I know WebMD isn’t a real doctor! I understand science! (Sort of. My AP Bio exam score 25 years ago may have given me overblown confidence in this realm,)
I was greeted by the blankest face I’ve ever seen. Not a great start, but I could deal with this. I modulated my manic tendencies, directing my good cheer at the three med students to my left who seemed to need it. In our half hour together, the only flicker of emotion that crossed Dr. A’s face was repeated eye rolls when the students’ responses to her questions disappointed her. Corrections were delivered in a condescending tone. My heart broke for them . . . and for me.
We spoke about the need for an MRI and bloodwork. About how decreasing the frequency of my infusions is wise since the complications (which include DEATH, by the way) grow more likely the longer I’m on the drug.
“Should I maybe try another drug now? I hadn’t realized my risk went up with time.”
“It’s an option.”
Ooooookay. Now to my list of questions
With a grin to the medical students, “Sorry, you get more than you bargain for with me in the office!” Back to the doctor,
“I’m finding orgasms especially elusive these days.”
“Yeah, unfortunately there’s no female Viagra yet.”
“And if there were insurance wouldn’t cover it! Or let you get some internet doctor to prescribe it!” I laughed.
“Talk to your urologist.”
“I’ve noticed that my voice is froggier than it has been.”
“It’s hard to describe . . . it isn’t as strong as it was . . . it’s sort of creaky?”
“Do you mean how it’s kind of sing-song?”
“Well, no. But now I’m self-conscious about how I’m talking.”
“That’s not MS.”
I felt embarrassed, dismissed, and foolish. I barely got through the rest of my list.
The physical exam was performed by the med students, deemed worthy of Dr. A’s eyerolls yet entrusted to try their skills on me all by themselves with her interrupting only occasionally to say things like “What do you notice about her gait? What causes that?” They did a fine job, but I couldn’t help but wonder if their assessments would accurately represent my progress. Maybe these benchmarks don’t matter, especially when one is as far along as I am? I was too discouraged to put up a fight.
In typical form, I kept my shit together long enough to exit only to fall apart in my Lyft home. How could I go back to someone that belittles med students in front of patients? And, worse, who addresses my concerns without compassion? I understand that you may not be an orgasm whisperer and that my vocal issues might not be caused by MS, but I definitely need a flicker of a smile when you tell me these things. My inner voice sing-songed my distress, dismay, and despair all the way home.
It’s now a month later, and I have an exit plan. With the best neurology department in the US just an hour away, it seems foolish not to give it a try. Plus, I had the good fortune to meet a charming doctor who works there at an event I attended recently. Here’s hoping we’re as compatible in the office as we were over dinner.