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.
About the Author
Jennifer Montgomery
I just “added” a new MS practitioner to my care team. My local practitioner is good, but not as assertive as I’d like, so I flew to Ohio to consult with (and keep—he’s great!) a doctor who is well known for his more forward focused practice. I feel as if I am in really good hands overall and am very hopeful for my future!
Gail Moore
I too have had this same experience.
I went my 6 month appointment last Friday
12/13/24, to find out my doctor was retiring that day!
This is the 2nd doctor in this practice I have retired.
They told me I'd be moved to the next one in the
Practice. This will be my my 6th different doctor since 2005
diagnosis. I'm starting the search after 19 years for
a dr who lives nearer to me, specializes in MS & looks younger
than me! Its very frustrating. Nice to read it's not just me.
carole h bennett
I am frustrated that i cannot find a doctor who is knowledgeable with MS Any suggestions, I live in eastern long island Suffolk county ny. Who can I call to find the right person
Elias Mercado
Finding the right fit for MS care seems to be frustrating if one has a neurologist who's been one for 20+ years. I'm now in a different state that's better for me since I'm heat intolerant. I'm looking for a new neurologist that's associated with university that specializes in Multiple Sclerosis.
Cheryl Peterson
Good article. I was diagnosed in 2010 and have had to “start over”at least five times. I now have to have “staff”; Neurologist, pain specialist, urinary incontinence, psychologist, and it goes on and on. It’s a full time job and with diminished cognition I’m not always sure about what I should be asking for. No wonder MSers are so tired.
M Conrad
Than you for this article. I, too, was referred to a neurologist where I lived in Nevada who also did not specialize i MS which I did know at the time of the referral. After much dissatisfaction with this individual for about a year, and him telling me “I am not your servant” (he really said that). After that I knew I had to change neurologists. Fortunately I did and now am under the care of the Cleveland Clinic. Again, thank you for your article.
Michelle McDonald
And yet more appreciation for you story. Personally, I've had MS for over 13 years, so I guess I should count myself lucky that I'm only reached 5 neuro's too. Still, I always wish for another in some way. I feel like once you've had MS for 10 years you're not that interesting to the doctor. And this doctor seems resistant to changes in treatments. I've been on 3 DMTs and they can't "see" new lesions since my first year - the year that I tried Rebif and a lot of steroids. But my disease has become more, and more unmanageable; changing/moving light blinds me and MS hugs have come calling. I feel like my body acclimates to a given treatment plan after a few years, making the damages scream. Personally, I did get any neurological care until I was in the hospital bed, unable to wake up.
Ellen Lerner
I was diagnosed at the end of 2005 and started medication early in 2006. There was a neurologist there that day I had first a spinal MRI and then a brain MRI who said I could see him so I made an appt with him. No doubt I had MS. He was ok. I stayed with fin 8 yrs and saw him yearly. .I know I had a mild case. The last time I saw him, I asked if I should have another MRI. I had read I probably should. He said he would think about it! A few days later he called me and said yeah I should have another MRI which I did. He reviewed it and said it looked about the same as the original one years before but a couple spots he wasn’t sure of and would send me over to the university to a neurologist there at the MS clinic. When I got there for the first visit, the MS neurologist asked me if I had any history of MRIs for the past eight years and I did not. I gave her all the copies of the previous MRIs (I always ask for a copy of the disk for every MRI. I still do.,. After she saw them she said I was fine and had no new lesions and no active ones.. She said I could go back to my neurologist or stick with her iif I preferred which I definitely did.
I knew I liked her a lot so I switched. I have been with her since for 5yrs. had an MRI done every year I think for four years. In the year before last she said, let’s wait a couple years for another MRI so next year I will most likely have another MRI..I still have seen her every year for an appointment, and she said I could call her if anything came up that I need. I am glad I was able to switch. It isn’t that my previous neurologist was not nice or did anything “wrong” but I felt he could have been a bit more proactive or communicative. Doctors do come and go and there isn’t much one can do about it. So far I have been fortunate to keep the same MS specialist but if she leaves I will most likely stay with that same clinic.
Jan
I was diagnosed in 1983 and have been through many drs for MS. I am currently treated by a NP. Not totally sold ATM, but I’m making it work.
TK
I was diagnosed in 2013. I too have had several neurologists and tests. All wonderful and did their very best. I learned to gain as much knowledge as you can. I do understand how some people keep it private and do respect their choice. This is a journey…
Mike Purcell
I was originally diagnosed in the year 2000. This was after I developed a knee problem. As many people are – I was hesitant to engage a doctor for help. I had previously experienced issues with my right knee because of earlier sports related injury but had never and any problem with my left knee. Eventually I made my way to an orthopedic doctor who sent me for an MRI for my knee. It wasn't for another year that they realized there was nothing wrong with my knee and suspected a neurological issue. At that time they were referred me to a neurologist.
The neurologist (2000) sent me through a litany of tests. Something called audio/visual evoked potentials… A spinal tap… A brain MRI… At that time there was no single test to identify MS. Not sure if there is a cycle test today. After the brain MRI they could see lesions per se my brain which led to the diagnosis. The other tests show no specific problems. Margin issues at best.
I'll never forget being told… MS… Good news/bad news. It won't kill you – that's the good news. The bad news is that it won't kill you. I still don't completely understand how anyone could say those things to someone else but I do understand the meaning of what was said. There began my journey which I'm still on. I'm grateful to have someone who has stopped by my side through it.