by Ashley Harris
Fact Checked by:
Jennifer Chesak, MSJ
by Ashley Harris
Fact Checked by:
Jennifer Chesak, MSJ
Changing neurologists led to new avenues for my health.
When my beloved neurologist of 13 years suddenly retired last year, my world skidded to a stop. In many ways, I was happy for him. He was approaching 65 and had had some health problems in recent years. But selfishly, I ached for myself. After a 20-year battle with multiple sclerosis (MS), I was losing my favorite doctor.
When we first met back in 2008, he was the only physician brave enough to treat me with a newer immunosuppressive drug offering promise in slowing the progression of relapsing-remitting multiple sclerosis.
He ordered blood tests every 3 months to monitor my system for changes that would make me vulnerable to the development of the rare progressive multifocal leukoencephalopathy virus (PML), a life threatening possible side effect of my medication. Fortunately, this drug is still safe for me and has kept my disease from worsening significantly.
During our time together, he and I joked that I saw him more frequently than my general practitioner, but the truth was, I did. I visited his office every 3 months for checkups between monthly infusions of my medication, and he knew more about my overall health than any other doctor.
Many times, he acted as if he was my GP, referring me to the best specialists for issues such as urinary tract or eye infections. Additionally, he had seen me through several milestones, including divorce, remarriage, two moves, and a job change.
What I particularly cherished about our relationship was our friendship, which grew out of a mutual love of travel and literature. His was strewn with copies of National Geographic and The New Yorker. “Check out this new poem,” he would say, handing over the latest issue. And when he found out my new husband and I were honeymooning in Paris, he made sure we knew just where to dine.
In comparison, my first meeting with my new doctor was a disaster. She was all business. Instead of exchanging friendly banter, she seemed laser-focused on her laptop.
To my chagrin, she immediately brought up a sensitive subject — my lack of recent MRIs that revealed the status of the scar tissue (sclerosis) on my nervous system. I hated those tests — the loud banging in my ears and the claustrophobia I experienced while surrounded by the machine. Because MRIs don’t always align with symptoms, and Dr. Miller knew how much I hated them, he hadn’t insisted on them in recent years.
But my new physician did. When I shook my head, she rather bluntly repeated, “We need an updated MRI of your brain.”
“Why?” I’d asked.
“Early signs of PML can now be detected in your brain,” she said.
This was news to me. Yet I just sat there, still longing for the comfort my old doctor provided. I answered the rest of her questions warily, and as soon as the appointment was over, I jumped up and left. But when I checked out, the office assistant prodded me to schedule the MRI.
“Not yet!” I barked. I needed time to process this visit and collect my thoughts.
“She’s capable enough,” I wrote in a text to my old doctor later that day. “But she’s not YOU!”
He responded immediately. “I miss you too,” he said. “But please give her a chance.”
Later, I thought more about the MRI. I did dread them, but compared to PML, which can be fatal, the inconvenience of an MRI would be very minor. Maybe my new doctor did have my best interests in mind.
So she wasn’t a friend, and maybe she never would be. But I already had plenty of friends. What I needed was a neurologist.
When I called my new doctor’s office to schedule the MRI, I was told that she had offered to prescribe a mild sedative that I could take before the procedure to help combat my claustrophobia, which I accepted. And because the scan was just for my brain, it took less than half an hour.
Just a few days later, I was surprised to receive an email from my doctor herself. “Good news,” it read. “Your MRIs are stable.”
This meant that not only did I not show any signs of PML, but also there had been no scar tissue development on my brain.
Over the past year, I’ve met with my new doctor three times. While our conversations still focus on the business at hand — my health — I will say that I’ve appreciated having a female neurologist. When I told her about my recent hot flashes, I groaned and joked that my slowing metabolism meant I couldn’t even look at a jelly-filled doughnut without putting on weight.
“Tell me about it,” she said, rolling her eyes. “Me either.”
For the first time in our relationship, the two of us laughed together.
Getting used to a new doctor and specialist isn’t easy, but it’s a fact of life that our medical professionals will indeed change over time. Hopefully, these tips will help you adjust when the time comes for you.
Although most medical doctors may have gone to school longer than the rest of us, in every other way they’re human. They vary widely.
Although my new doctor hadn’t necessarily read the latest poem by Billy Collins, from our very first visit she proved she was every bit as qualified as my previous neurologist to administer medical care. And because she is female, I feel freer to discuss how other issues associated with women’s health relate to my illness, such as menopause and sexual function.
A new doctor will have different ways of doing things than what you are used to.
My new doctor referred to a computer screen when she first talked to me. While I found this communication method a little impersonal at first, it allowed her to absorb my rather complicated medical history more quickly. The upside is that she is very tech savvy. She sends me emails to inform me of the latest results of all of my labs right away, which has been a welcome change.
The point of your relationship with any doctor, whether a general practitioner or specialist, is your health. It is not, alas, a friendship. I had been extremely lucky with my first neurologist to have both but expecting this from a new doctor was unfair to both of us. After all, I pay for her medical expertise not for companionship.
My old neurologist had personally recommended my new one to me. I trusted his opinion that she might be a good fit, and as it turned out, I think he was right. But I also take heart from the fact that nothing is permanent. If you ever feel that your current doctor or specialist isn’t meeting your needs, you have every right to keep shopping.
Due to the proliferation of Yelp or Google reviews, you can usually find ratings of medical practices and doctors online. Finding a good specialist can be more difficult, but a good place to start is the national organization for your particular illness. For example, the National Multiple Sclerosis Society offers phone support to help MS patients connect to local healthcare professionals.
The reality of living with a chronic illness is that your healthcare professionals play a major role in your well-being. The nature of chronic illness implies that we will be with our doctors for a long time. Having a bond with your doctors is great but receiving the care you need is what truly matters.
While my new neurologist may not be giving me Parisian restaurant recommendations, I am confident she is giving me the care I need to continue managing my MS.
Fact checked on March 16, 2022
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About the author
Ashley Memory lives in southwestern Randolph County, North Carolina, surrounded by the mystical Uwharrie Mountains. She has written for NBC THINK, Wired, and The Independent and is currently working on a memoir about finding love and happiness while living with a chronic illness.