Changing neurologists yet again to treat my MS
I've had great experiences, but shifts in my healthcare team are challenging
I was diagnosed with multiple sclerosis (MS) in 2014. Over the past 10 years, my MS has been managed by five healthcare providers.
That’s not how I envisioned my MS care. I’ve had the same primary care provider for almost 20 years, and I naively thought I’d be able to do the same for my MS specialists.
I received my diagnosis from a neurologist who wasn’t an MS specialist. Before then, I spent 18 years dealing with neurological symptoms that were unexplained or misdiagnosed. The neurologist ordered multiple medical tests, which finally led to my diagnosis.
The neurologist was an excellent physician, but I preferred receiving care from an MS specialist and asked for a referral. I wanted to do what I thought was best for the long-term management of my MS.
Even though I live in a large city, only two neurologists there specialized in MS and were practicing at a facility with an academic affiliation. I researched these physicians, the healthcare system, and insurance coverage and then made my selection.
Making the leap
I made the right decision. For the first five years after my diagnosis, I alternated between being seen by a neurologist and a nurse practitioner (NP) at an MS center affiliated with a large healthcare system. I’ll call these healthcare providers No. 1 and No. 2.
Both of these providers were outstanding. Being diagnosed with a chronic disease that has the potential to be debilitating is life-changing, and I needed a lot of support. They educated me about MS, started me on a disease-modifying therapy (DMT), and set me up with physical and occupational therapy.
Both providers were supportive, caring, and empathetic. I trusted them wholeheartedly with my care.
Well, all good things must come to an end. Around five years after starting my care at the MS center, I lost my NP, who had to leave to take care of a sick loved one. I was understanding, empathetic, and appreciative of everything this NP had done for me, but selfishly, I was concerned that my health would suffer as a result.
Fortunately, I continued to be seen by the same neurologist for the next year and received excellent care. However, that also ended when this doctor left clinical practice. Before that, another NP was hired and took over my care. I’ll call this person healthcare provider No. 3.
This NP was knowledgeable, and we had good discussions about medication-related issues. We discussed, for example, whether oral steroids are as effective as intravenous steroids for MS relapses and whether a DMT should be stopped if you have COVID-19. At one of my appointments, I brought in an article from a medical journal discussing the effectiveness of vaccines in people with MS taking DMTs. The NP was familiar with the article, and we had a fruitful discussion.
I was confident of the NP’s ability to care for my MS and make good decisions regarding my DMT, but it wasn’t the “warm, fuzzy” type of interaction I’d grown accustomed to. I also wanted someone who would work directly with a neurologist specializing in MS in case my disease progressed or became more complex. I decided that having an extremely knowledgeable healthcare provider would be in my best interest, though, even if I didn’t like the bedside manner. They were recruiting a neurologist specializing in MS, so I was hopeful it would happen quickly. I continued my care with this NP.
Healthcare provider No. 4 was the neurologist hired by this MS center to oversee and collaborate with my NP. I saw this neurologist only once before they left the practice, so I didn’t form an opinion about them either way.
Today’s team
That brings me to my most recent medical appointment in early November. When I arrived, I was informed that my NP (i.e., healthcare provider No. 3) no longer worked for the healthcare system and I’d see a new healthcare provider. This news disappointed and frustrated me.
Healthcare provider No. 5 is a neurologist who specializes in MS. The appointment went well. After discussing the side effects of my current DMT and my most recent laboratory results, I felt confident in this person’s knowledge. The bedside manner is a combination of healthcare providers Nos. 1, 2, and 3, which I find acceptable.
Change is hard, and it’s hard to trust an unknown entity when my health is at stake. I hope my new MS healthcare provider will stay around for the next 10 years of my MS journey.
Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to multiple sclerosis.
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