Personalizing Patient Care and Addressing Invisible Disease Burden in Multiple Sclerosis

Multiple sclerosis (MS) is known as a chronic, immune-mediated neurologic disorder characterized by inflammation, demyelination, and neurodegeneration in the central nervous system. Raising awareness of the disease remains an important priority as the disease continues to affect a diverse population with varying clinical presentations and outcomes. Although advancements in diagnostic criteria and therapeutic options have improved disease management, gaps in public understanding persist.

Treatment decision-making in MS has evolved toward a more individualized approach, taking into account disease activity, patient preferences, comorbidities, and lifestyle factors that may influence adherence.¹ In addition to physical disability, patients frequently experience less visible symptoms, including fatigue, cognitive changes, and mood disturbances, which can significantly affect quality of life.^2,3 Misconceptions about MS, including assumptions about prognosis and functional limitations, may contribute to stigma and delayed care, underscoring the need for continued education in the broader community.⁴

In a recent conversation, Constance V. Katsafanas, DO, the director of the Neurology Residency Program at Marcus Neuroscience Institute, a part of Baptist Health South Florida, spoke with with NeurologyLive^® to explore key considerations in the management of MS. She noted that these considerations for patients with MS included strategies for personalizing therapy, identifying and addressing invisible symptoms, and navigating common misconceptions associated with the disease. Katsafanas also highlighted ongoing areas of research and the evolving landscape of care aimed at improving outcomes for individuals living with MS.

NeurologyLive: How do you approach personalizing treatment plans for patients that have been newly diagnosed versus those with longstading disease who are now experiencing progression?

Constance V. Katsafanas, DO: The keystone thing that you have to remember is that MS, just like any medical condition, should be treated with personalized attention. Personalized attention might mean, what's important to you? Do you travel a lot? Do you not have a place where you can reliably refrigerate medication because you're flying all over the country? Are you a college student that doesn't have time to go to an infusion, even if it's only 2 days every six months? Do you not swallow pills well? Are you afraid of needles? These are all things that play into how we can treat people with a lot of different diseases, but in particular MS.

I can have the best medicine in the world, I can have the greatest invention known to mankind, but if my patient won't take it, it's useless. You have to find the thing that resonates with people. Maybe somebody only wants to take a pill, and they'd rather take a pill every day than take a shot once a month. Okay, great. So, you can't do ofatumumab, but you can do fingolimod. There are so many things that you can tailor to each person.

It's not just like this medicine is the best because it's new and it came out. I can treat MS by somebody giving me less than 30 seconds a month—you take it off, you pop the cap, do a quick injection, and that's it, you're done for the month. But that only works if you're not afraid of needles, and that only works if you have a place to keep the medication. Some people are like, “Nope, I want to throw it in my purse and take it with lunch every day.” Okay, if that's what you need to do to remember to take your medicine.

There are a wide variety of medications available with multiple different mechanisms of action. To answer the second part of your question—how do you counsel somebody, and what do you do if somebody has disease progression? First of all, you monitor both radiographically and clinically to see if anybody is having forward disease progression. If they have radiographic progression, even without symptoms, I tend to switch therapy. If they're having new symptoms with radiographic progression, obviously you're going to want to switch therapy.

But I'm talking about all of these drugs—some target sphingosine, some target B cells—it’s very different. If somebody breaks through on one thing, it's very possible that something else might work for them. There are monoclonal antibodies out there that have different mechanisms of action than any of the other drugs we've used before.

So really, it's about that tailored approach. Different doctors also have different approaches. Some physicians will do step therapy, which is not something that I typically do. I typically want to go for the most efficacious option with the least side effects right out of the gate—whatever fits the patient's life best.

But sometimes they'll say, we're going to start on something less aggressive—maybe there are very few lesions, or maybe somebody’s a little older. That's an option too. It's just a matter of what fits your patient, what fits their particular disease process, and what fits their lifestyle, because we don't talk enough about making things accessible for patients.

We talk a lot about insurance and how hard that is—and we can all agree that's awful and hard—but we don't talk about simple things, like, “I'm a sales rep and I travel, and I don't always have somewhere to keep medication refrigerated.” Don’t give them something that needs refrigeration. These are things you need to talk about.

My patients with MS that I've treated over my career—these are people I know really well, because I know what they do, where they go, what they do for fun. I know if they like to travel. I know if they're going to take 3 months off and hike Machu Picchu. I know these things because it's important when you're somebody's doctor and you're talking about a medication that needs to be given at very specific intervals. So, a tailored approach is the most important thing.

Beyond the physical manifestations of disease, how do you address and manage invisible challenges such as fatigue, cognitive changes, and mental health that can impact a patient's quality of life?

It's really important to know that mental health is health, and you must address all facets of health. If somebody had poor vision, you would recommend glasses. If somebody has poor mental health, you recommend therapy or pharmacologic intervention to help them deal with that and get back to their functioning baseline, right? It's no different than glasses. Antidepressants are the same thing as putting glasses on your face when you can't see.

I think that there's still a lot of stigma around mental health, which is unfortunate, because it is the one thing that, when stigmatized, people really hide. There are whispers, raised eyebrows—but addressing the mental health of any patient with a lifelong disease process is extremely important. Mental health in poststroke patients is important too. It's something we don't talk about enough as physicians, because we're like, “Okay, how's your MS? You're good? You're good. Goodbye.” But there are 12 people in the waiting room. Still, it's something we have to address.

MS affects a lot of women. It affects men too, certainly, and men have their own challenges—but women do as well. There are unique issues in women's mental health, in depression, and in high-functioning neurodivergence. Masking is something a lot of women are very practiced at, and it's not good for mental health.

Invisible symptoms are things that aren't obvious to people looking at you. I don’t mean something like your arm feeling weak but still being functional—that’s physical. Invisible symptoms are things like fatigue, brain fog, confusion. Patients might say, “I used to be really organized, and I just can't keep it together.”

One of my patients described it as, “MS makes me feel like I'm walking through oatmeal with my brain.” I said, “we need a minute to unpack that,” and he explained: everything is harder than it should be—thick, slow, cumbersome—which made a lot of sense. Silent and invisible symptoms are a big reason why I've always been very aggressive with treating radiographic breakthrough—changes that show up on imaging before physical symptoms appear. Because we’re still learning how different parts of the brain affect different people.

The goal is to stop damage from accumulating. Once damage is done, that horse is out of the barn. You can work around it and improve, but we don’t yet have a way to fix it. So, when someone has cognitive complaints, I look at the whole patient. First: how do we stop disease progression? Second: what can we do about sleep, mental health, depression, anxiety? These are things that help them function better.

I often use a cell phone analogy. We’ve all experienced planned obsolescence—you get a new phone, it’s fast, it does everything. Two years later, the battery drains faster. It still works, but not the same. An MS brain is like last year’s phone. It still does everything—it’s just more sensitive to things that drain the battery. If you get sick, if you’re stressed, the battery drops quickly, and symptoms flare.

So, the approach is: don’t drain the battery unnecessarily. But that looks different for everyone. You can’t just say, “Don’t go to work” or “Don’t take care of your kids.” Life doesn’t work like that. We focus on modern solutions—leveraging technology, improving sleep, offloading tasks where possible. These are the strategies I recommend, and the analogy helps patients understand how to manage their energy.

What research gives you hope for the future, and what is the most critical misconception in the public that still holds about living with MS?

Research is the hope for the future. Magic is just science we don’t understand yet. As we explore questions like—what autoimmune process is this? Could we find biomarkers years before lesions appear? All of this gives me incredible hope that we’ll be able to rein in this disease.

The other part of your question is so important, because MS can be very isolating—not because of the patients, but because other people don’t know how to deal with it. It’s not contagious. If someone overdoes it one day, it doesn’t cause permanent damage—they may just need recovery time.

What I tell my patients is something I heard years ago: when you have MS, you have a disease—the disease does not have you. You are still the same person you were before diagnosis. This is just something you have, and we can manage it. I’ve had patients come in with severe symptoms who say, “I knew something was wrong, but I was afraid to find out.” MS are 2 small letters with a big impact, and people are understandably afraid.

But the goal of treatment right now is relapse-free living. That means no new symptoms, no progression and we have fantastic medications that can help achieve that. You want pills? We have pills. You want injections once a week or once a month? We have those. You want something like a “set it and forget it” approach—we have infusions every 6 months.

There is help and there are so many people living full, productive, beautiful lives with MS—raising families, building careers, traveling, going to school. MS is not the thing that is going to wreck your life. We can treat it. We can support you. We can provide resources.

Are there outliers? Yes. But by and large, we’re getting pretty good at this. If you’re a general neurologist who feels out of your depth, there are specialists out there. There are MS specialists who are always willing to help, provide consultations, or offer second opinions and you won’t meet one who isn’t happy to help.

Transcript edited for clarity. Click here to view more of our coverage on multiple sclerosis.

REFERENCES
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2. Namsrai T, Parkinson A, Burns R, et al. Measuring Fatigue in Multiple Sclerosis: A Rapid Review. Patient. 2025;18(6):623-644. doi:10.1007/s40271-025-00759-1
3. Gómez-Melero S, Caballero-Villarraso J, Escribano BM, Galvao-Carmona A, Túnez I, Agüera-Morales E. Impact of Cognitive Impairment on Quality of Life in Multiple Sclerosis Patients-A Comprehensive Review. J Clin Med. 2024;13(11):3321. Published 2024 Jun 4. doi:10.3390/jcm13113321
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