Patient and Clinical Perspectives on Advancing MS Care Through Treatment, Advocacy, and Research

WATCH TIME: 6 minutes

EP: 1.Dual Perspective on Recognizing the Elusive Early Signs of a Multiple Sclerosis Diagnosis

EP: 2.Dual Viewpoint on Diagnostic Testing Strategies for Early Multiple Sclerosis

EP: 3.Shared Decision-Making Between Patient and Provider in MS Treatment Planning

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EP: 4.Patient and Clinical Perspectives on Advancing MS Care Through Treatment, Advocacy, and Research

Early signs and symptoms of multiple sclerosis (MS) can be subtle and varied, often leading to initial misdiagnosis or delayed recognition. These may include visual changes, numbness, fatigue, or mood-related concerns, which can be mistaken for more common conditions. To reach an accurate diagnosis, clinicians typically rely on MRI imaging and other specialized tests to rule out alternative causes. Once MS is identified, shared decision-making between the patient and clinician may be essential, aiming to guide individualized treatment strategies and support long-term disease management.

In collaboration with National MS Society, NeurologyLive^® held a roundtable discussion with an MS expert and patient living with MS who talked about the early signs of the disease and the impeding challenges that can delay diagnosis. The featured guests included neurologist Ellen Mowry, MD, director of the Multiple Sclerosis Experimental Therapeutics Program at John Hopkins Medicine, and Nicole Boschi, PhD, director of regulatory affairs at the National Multiple Sclerosis Society, who spoke on the importance of patient-clinician collaboration in navigating care and treatment planning.

In this final episode, Boschi and Mowry talked about the evolving landscape of MS care from both a patient and clinical-research perspective. Boschi, as a patient newly diagnosed with MS, shared her anticipation of starting treatment and her involvement in advocacy efforts with the Society, including work on Medicaid access and pharmacy benefit reform. Mowry highlighted ongoing advancements in MS research, particularly in progressive MS, and emphasized the importance of accurate diagnosis, rehabilitation strategies, and international collaboration. Both, in the conversation, underscored the value of community resources and a team-based approach to care.

Transcript edited for clarity.

Isabella Ciccone, MPH: Thank you both for sharing your perspectives on this. Those are all the questions that I have for this discussion, unless there was anything else that you wanted to add to this conversation in terms of what you're looking forward to this year in the field of MS—or even on the patient advocacy side of things—what you're looking forward to there as well?

Nicole Boschi, PhD: Personally, I'm looking forward to just starting on treatment. I think the most anxiety-inducing place is knowing that you have this disease and not doing anything about it yet. So, I'm very excited to have my first treatment tomorrow. Professionally, as I do work for the National Multiple Sclerosis Society, there are so many interesting advocacy things going on. We're working on pharmacy benefit manager reform. We're working on being able to keep access to Medicaid for people who need it. There are so many interesting advocacy efforts, and I'm so glad to be part of it—and also to join the people living with MS who are our advocates. Now I'm one of them, and it's so empowering. I can't wait—we have our Hill Day next month, and I can't wait to go to the Hill with them and say, "Now I'm one of you, and we're in this together."

Ellen Mowry, MD: Yeah. In addition to working with people with MS in the clinic, as I mentioned earlier, I spend a lot of time doing research, and so I feel lucky to be engaged with that community as well. I know there are people all around the world who are constantly thinking of new ideas, new potential treatments to test, designing the trials to test out those treatments and see if they help people with MS—new ways of trying to measure MS and quantify what's happened in people, so that it will enable that medication development. New ways of doing rehab, new ways of improving the diagnosis and the diagnostic criteria to make sure people are getting an accurate diagnosis so they can start on treatment in time.

I'm always excited to go to our international and national meetings and find out what new details there are. There's a lot of push to help people with the forms of MS that typically come up later in life, where things get a little bit slowly worse—called progressive MS. There's a lot of attention and promising new medications around the corner. So hopefully, hopefully, we'll see some of those come to fruition in the next year.

Isabella Ciccone, MPH: The reason I wanted to talk about patient advocacy is because after a diagnosis and after having a treatment plan, where would the patient go from there in terms of maybe extra resources or extra support from the community? So, I thought that was also very important to highlight.

Nicole Boschi, PhD: The National Multiple Sclerosis Society is a fantastic resource for those living with MS—for those affected by MS. It’s really great. I know that I've sent people in my own family videos from the website to explain what this is, and I highly recommend you get in touch with the Society.

Ellen Mowry, MD: I agree. I also send most people to the National MS Society for well-balanced information. I also think it's generally nice to connect with other people living with MS. Sometimes I think what we see in the media is a little bit skewed. I would say most of the people with whom I get a chance to work who are living with MS are out living their lives and doing the things—and you don't even know that they live with MS unless you ask. Because, you know, with these medications, folks are doing much better than in the past. But yeah, I think the National MS Society does a great job. And as a clinician and researcher, I like engaging on many levels, including in fundraising to help bring care and new science to the field.

Nicole Boschi, PhD: Always happy to educate people on what MS looks like. And when I was first diagnosed, I remember my grandmother thinking that this was the end—because that’s what she knew. The people of her generation, when they got MS—yeah, they were in wheelchairs. And it's not like that now, because of research and because we have such great treatments. But there's work to be done. There still is no cure. And I know that between Dr. Mowry’s research and my advocacy, we're going to get this done.

Ellen Mowry, MD: It's a team approach.