by Erin Vore
Fact Checked by:
Jennifer Chesak, MSJ
by Erin Vore
Fact Checked by:
Jennifer Chesak, MSJ
When it comes to managing multiple sclerosis (MS), I like to think of it as a symphony.
I believe that nutrition can positively (or negatively) impact physical, mental, and emotional health. I’ve consulted functional medicine doctors and nutritionists.
I currently eat gluten-free — except that one time my plane was delayed 5 hours and I needed to get home and I was sad and tired and stressed out and I ate the heck out of a Home Run Inn personal size cheese pizza on the cold, hard tile floor of the Chicago Midway International Airport.
I experiment with and use essential oils. I also believe prayer, meditation, and mindfulness are an important part of overall health.
However, in the symphony of my MS care, these things are all just instruments and none of them replace the advice and expertise of my neurologist, who is the conductor. That’s why it’s so important to find a neurologist who is a good fit — and why it can feel like such a challenge when it feels time to switch.
When I was diagnosed with MS in December 2014, after experiencing the utterly terrifying hogwash that is optic neuritis, I took the advice of my eye doctor as well as my neuro-ophthalmologist to schedule an appointment with a local neurology private practice.
Aside from the optic neuritis, I was a generally healthy, active 34-year-old at the time — and I was very fearful about the implications of temporarily going blind in one eye.
My first neurologist lasted only 6 months. He was older, probably my parents’ age, and whenever we spoke, it was brief. I remember he’d often walk backward slowly, inching toward the door. Sometimes, he had one hand on the doorknob. Not exactly the kind of body language that communicates being present and caring.
He retired in the summer, and I might be wrong, but I think his desire to be finished with his life’s work betrayed his bedside manner.
Lesions, plaques, scars, myelin sheath, MRI, disease-modifying therapy, brain shrinkage: This is just the starter pack of terms in a lengthy list of scary new vocabulary for anyone with MS. I relied entirely on my neurologist’s expertise and recommendations. Also his assistant’s. She was a true angel.
Before my diagnosis, I had no need for any doctor besides the usual suspects: primary care, gynecology, dermatology. But when you’re diagnosed with a chronic condition, all of a sudden you have a phone number of a medical professional most people will never use, for a condition they’ve never heard of, on speed dial.
I was in way over my head. Had no idea what MS was before I was diagnosed. I knew no one else with the condition. The learning curve was steep.
So, I didn’t love my neuro, but I was grateful. He was really, really good — the best in the city. Everyone told me that. But he retired, and I had to switch to a respected but huge university system or take a gamble on a neurologist who didn’t specialize in MS at my existing practice.
When it comes to a degenerative and progressive chronic condition that could potentially render me immobile, unable to speak, swallow, or form thoughts — not to mention make me blind — I want to be able to connect with a real, live person in a timelier manner.
I left for the larger system and immediately felt the flip-flop result of my decision: I loved my doctor and hated how huge the practice was.
Need to ask a simple question? Fine, but get ready for your call to be answered by an automated recording, then to press the number 4, then 6, then wait 20 minutes, then leave a message with a receptionist. When one of the nurses or techs call back, you will not be available. They’ll leave a message, but not really answer the question, so you’ll call back and repeat the process.
I can be patient. I work on being patient. However, when it comes to a degenerative and progressive chronic condition that could potentially render me immobile, unable to speak, swallow, or form thoughts — not to mention make me blind — I want to be able to connect with a real, live person in a timelier manner.
So, you might imagine, I felt unsettled and uncomfortable at the big university. Again, my doctor was wonderful —everything was right about this doctor — but sometimes the right people in the wrong setting still cause us to leave. And I did, just a few months ago.
In the almost 7 years since my diagnosis, I’ve accrued quite the group of local friends with MS. We’re a unique bunch. Through this group, I learned that my original practice now has an MS specialist.
I asked a lot of questions and felt compelled to schedule a consultation. I felt overwhelmingly happy with the entire experience of the consultation. It was easy to schedule, I was talking to real humans, and I had an entire hour with the neurologist whom I immediately liked. This all made the thought of switching practices seem easy and worth it.
As a natural people pleaser, however, the thought of leaving my doctor made me tense up and feel nauseous and uneasy.
However, if I’ve learned anything by having a condition that loves to play tricks on my body, it’s that I need to do what’s best for my mental and overall health. And that meant leaving my doctor of 6 years.
As a natural people pleaser, the thought of leaving my doctor made me tense up and feel nauseous and uneasy.
After I made the decision to leave, and because I wasn’t having any urgent symptoms that needed attention, I went on with my regularly scheduled infusions but gave my nurse the new order from my new doctor. I scheduled a follow-up appointment that I’ll attend in a month.
I wrote a letter to my old neurologist that kindly, but honestly, explained my reasons for switching as well as conveyed my sincere gratitude for the care and guidance he gave me over the last 6 years.
I wrote it, pressed send, felt nervous (then relieved), and waited.
A few days later, I received a message back on the patient portal from my old neurologist. It was short but thoughtful. In it, my neurologist thanked me for my letter, said he understood my frustrations with the organization, promised to pass them on to administration, and asked me to give his well wishes to my new neurologist and her assistant, both of whom he’s worked with and still collaborates with from time to time.
That my old neurologist intends to pass on my frustrations to administration makes me hopeful that future patients might not experience so many bureaucratic headaches like I did. After all, I don’t wish ill will on my old practice, and I like that I live in a city with more than one option for MS care. I know not everyone has this luxury, not to mention the privilege of insurance I can take to either a public or private practice.
If you’re thinking about switching neurologists, for any number of valid reasons, setting yourself up for a smooth transition is really important.
I find lists are helpful, so here’s a quick guide for seamlessly transitioning practices. Tweak it to suit your own situation.
Ask yourself: What about my current practice do I like and dislike? If the dislikes outweigh the likes, is there another option for receiving care?
How is your health? If you are in exacerbation or experiencing upsetting symptoms, it might be just the right time for some people to switch.
For others, it may cause even more distress to switch while in crisis mode. If that sounds like you, perhaps wait until your health is in a better place before proceeding.
This initial conversation can go a long way. It may go well or you may decide you’re better off right where you are.
Sometimes there’s no “right” option. Sometimes you have two good options. Make a choice and stick with it.
It may be the English teacher in me, but I’m a big fan of putting in writing the things we want to change and the things we’re grateful for. I did both in my letter to my former doctor. Be honest. Be grateful and gracious where you can.
People with MS handle so many things on a daily basis. Hardly anyone sees this invisible labor. Once you make the decision, take a deep breath, thank yourself for going through a not entirely easy process, and move forward.
Everyone who has MS knows that we’re like snowflakes: No two experiences are the same. I know people who aren’t bothered by the bureaucracy of a large healthcare system. I can only be me, and for me, leaving was better than staying.
I’m hopeful I’ve found my “home” at my new practice, but I also included a line in my letter to my old doctor that “perhaps one day I’ll return.” I can’t imagine that scenario right now, but with MS, you learn never to say never.
MS isn’t linear. My movements are up and down, forward and backward, kinetic and tired. It’s a sort of paradox that I’m always moving forward, even when I’m not, even when I’m starting all over again. For now, I’m where I belong, in the care of capable hands at a practice I trust as I journey along with MS, my strange passenger in tow.
Fact checked on January 28, 2022
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About the author
Erin Vore is a high school English teacher and Enneagram four who lives in Ohio with her family. When her nose isn’t in a book, she can usually be found hiking with her family, trying to keep her houseplants alive, or painting in her basement. A wannabe comedian, she lives with MS, copes with a whole lot of humor, and hopes to meet Tina Fey one day. You can find her on Twitter or Instagram.