Hanna Jones: Hi, I am Hanna. I'm 31 years old, and I have been diagnosed with multiple sclerosis.

Neha Pathak, MD, FACP, DipABLM: Today we're diving into an important and often misunderstood condition, multiple sclerosis, or MS.

Jones: I'm a mom of three wonderful children and a military spouse. We were on vacation, actually. We sat down for brunch. I felt great. And then by the end of brunch, I couldn't see, and I knew that something was wrong. My left eye was like somebody shined a flashlight directly in it, and my right eye was not as bad. I could see a little out of it, but it just happened so quickly, and I didn't know what to do. And my husband was like, "You have to get to the doctor." And so we went to urgent care.

Pathak: MS is a chronic autoimmune disease that affects the central nervous system, disrupting the flow of information between the brain and spinal cord and the rest of the body. It impacts more than 2.8 million people globally, most often striking younger adults between the ages of 20 and 40, and women are significantly more affected than men. Symptoms can range from fatigue, blurred vision, and numbness to muscle weakness, coordination problems, and even cognitive changes.

Jones: From there, the testing was all very swift. What does all this mean? I really need you to, like, look me in the eye and tell me what's happening. And he just looked at me and he said, "I apologize. You have multiple sclerosis." It was just—everything felt like it happened so fast. I lost my vision in February, and I actually got my diagnosis on May 9th, 2023.

Pathak: To make things even more complicated, the course of the disease varies from person to person. Some people experience relapses and remissions, while others face steady progression. Although the exact cause remains unknown, research suggests a combination of genetic and environmental factors play a role. But a diagnosis is only the beginning.

Jones: I would say the biggest change that it's made in my day-to-day life, especially being a mom, is I just can't play as much as I used to be able to. That was just really scary—to think about, how am I gonna be a mom to my kids? I had this idea of who I wanted to be, and this kind of smacked me in the face. I had to learn who I wanted to be now and grieve who I used to want to be. I can't be her anymore. I can be parts of her, but I can't be her. Your life is not over. My whole life, I never thought anything like this would happen to me. And so when it did, it was either, okay, just don't learn anything about it—or learn all you can. And that helped me feel stronger and more confident. I think it helped me accept some things a bit more because two things can be true at once. You can have a great life and have a not-so-great disease at the same time.

Pathak: For newly diagnosed patients, the path forward can feel uncertain. What should you expect? What are the early signs to watch for? When is it time to start treatment? In this episode, we'll explore what it's like to live with MS and discuss treatment options for this complex condition. More from Health Discovered after a short break.

Pathak: Welcome to the WebMD Health Discovered Podcast. I'm Dr. Neha Pathak, WebMD's Chief Physician Editor for Health and Lifestyle Medicine. In this episode of WebMD Health Discovered, I sit down with Dr. Robert Bermel, Director of the Mellen Center for Multiple Sclerosis at the Cleveland Clinic. He is going to walk us through what a new MS diagnosis means and what comes next.

Pathak: We'll explore the diagnostic process, treatment considerations for early MS, how to manage quality-of-life issues, lifestyle interventions, tips for caregivers, and innovations that give patients more control over their future. Welcome, Dr. Bermel. It's so great to have you.

Robert Bermel, MD: Thank you so much, Neha. It's really nice to be here today and talk about a topic that's near and dear to my heart.

Pathak: I'd love to understand a little bit more about what MS is, and what are the most common age groups and types of demographics for someone when they're diagnosed?

Bermel: Yeah, so MS is a disease that we've come to understand a lot more about over the last 20 years. It's a disease that was very challenging to diagnose before we had MRI scans, and now that MRI scanners are much more widely available, we're appreciating that MS is even more common than we originally thought. Currently in the U.S., it's thought to affect about 200 out of every 100,000 people. Most people can think of at least one person they know who has been affected by MS. Many people know multiple individuals in their life who have been impacted by MS, and it's something that we still don't fully understand.

Bermel: There may be an autoimmune tendency that rests in the genes and genetics, but also some sort of environmental triggers. That being said, we still do not fully understand the cause of MS. We've gotten much better about responding to it when it happens, which we'll talk a lot about today.

Pathak: Earlier we heard the story of Hanna Jones, and she described her diagnosis happening because of a very specific symptom—she lost her vision—and that led to this diagnostic journey. I'm really curious: in your practice, what are some of the earliest signs and symptoms of MS that you see in patients? Is it that quick of a shift from being healthy to discovering that you have some massive, major, significant symptom?

Bermel: So Hanna's story is a typical story for what's called relapsing-remitting MS, the most common kind of MS, where someone does get an attack of a neurological symptom that catches them off guard. Vision loss—unilateral vision loss—something called optic neuritis is one of the most common first attacks of MS. We would say that it starts subacute—so it's not lightning fast, but tends to build up over hours to days. This is not the kind of thing that comes and goes. It's usually the sort of thing that would bring someone to an emergency room or to their doctor, at least to say, "Hey, something's wrong. I've lost vision in my eye and it's painful, and we need to figure this out."

Bermel: That's a fairly common, and very obviously concerning, first attack of MS. It can be more subtle than that. Sometimes when we encounter people like Hanna, who have had a very serious attack like that, we ask them questions about whether in the past they ever had any neurological symptoms. And sometimes we do uncover that people have had more subtle neurological symptoms in the months or even potentially years leading up to that, that would not have brought them to an emergency room, would not have brought them to a doctor necessarily—but in retrospect may have been early footprints of MS.

Bermel: There's always a balance here, because everybody has twinges, numbness, and tingling. But typically those things come and go and they get better. What concerns us for MS symptoms are typically symptoms that last longer than 24 hours, that get worse over hours or days, build up before getting better, and that are generally pretty unlike anything you've experienced in your normal day-to-day life.

Bermel: So, unlike the kind of numb and tingly feeling that people get if they go out in the cold or if you position a limb wrong, in that they don't typically get readily better. The issue with MS is it can really affect any area of the central nervous system, and that's one of the things that's made it historically tough to pin down and challenging to diagnose—it does not present the same way in everybody.

Bermel: In fact, it presents differently in different people, and that's what we spend a lot of our time battling in the clinic.
Pathak: Yeah, and I really want to pull on that thread. I think that was super helpful for thinking through what are the most common ways you end up finally presenting for care. Given that it can be so different the way it presents in different people, how do you distinguish it from other neurologic conditions?
Bermel: MS is one of those named neurological conditions like Parkinson’s or Lou Gehrig’s or Alzheimer’s. It’s one of those ones that kind of strikes fear in people’s hearts because it has a reputation as a disabling condition. But neurologically, they’re all quite different. And it’s really challenging to, as a patient, sit at home and look up symptoms and try to identify just what the cause of something is.

But the good news is that for a neurologist—very highly trained in how to differentiate these things and differentiate them from just the normal variation of human existence—a nervous system that does not have a disease but glitches every once in a while—we see that too. But in a neurologist’s hands, we put not just that history, which we’ve mostly been talking about as the story of what happened to people, together with a neurological exam that is everything from seeing how the eyes move and checking the vision to tapping on the reflexes and checking the sensation and balance and coordination.

That’s often an in-person activity where we examine the patient in detail with diagnostic tests, right? Doing things like bloodwork to evaluate for systemic conditions, MRI scans to evaluate for MS or other conditions that can cause MRI abnormalities. With that whole complement of a workup, it becomes actually a fairly sophisticated endeavor to arrive at a correct answer and a correct diagnosis.

Pathak: So let’s talk about then that patient or that person that’s come in to see you, and now you’ve identified this person as fitting the criteria for a multiple sclerosis diagnosis. Talk to me about how you talk to this patient. How do you talk to the Hanna Jones that comes into your office and you're going to present them with all of this information and this new diagnosis?
Bermel: I think of the people that walk in the front door to our clinic and the worry and the anxiety and all of the possibilities running through their minds. And I think we try to meet each patient where they’re at. We have some people who have been moving around through the medical system looking for answers and are just hungry for any answer that they can get after many years of symptoms. And we get some people that are very new to this and not interacting with the medical system at all.

So I think meeting them where they’re at is quite important. We try to place a premium on being 100% confident of the diagnosis, and that way when we have a conversation about a new diagnosis, we can bring some certainty to that discussion. I think that’s important. And oftentimes when a new diagnosis occurs with something like MS, people’s minds immediately jump to the worst possibilities. Or they have maybe a picture in their minds of someone that they knew from decades ago that was very disabled from MS, and that brings a lot of emotion into the discussion.

I like to meet the realities of facing a diagnosis like this also with some optimism because what’s really exciting to talk about is that the treatments for MS and the way we approach this disease have just completely changed in the last 25 years—and especially in the last 10 to 15 years—where we now have highly effective therapies. And you can honestly sit in an exam room these days with a newly diagnosed patient with MS and say, “We’re not going to let you end up in a wheelchair.” That we have really highly effective therapies for this, and that we know how to treat it. And that’s really exciting because I think it shifts the conversation to an optimistic note, for sure.

Pathak: And so I want to pull on that piece because clearly there is this full picture of this patient in front of you. So what do you want to know about their life to help guide those choices? And I’m really, again, thinking about Hanna’s story. She’s a younger person, she has three children. She sounds like a very active person. What things do you want to know about how they’ve been living that’s going to help guide some of your treatment decisions?
Bermel: It’s all part of meeting that patient where they’re at—understanding who they are as a person, what their goals for their life are. We spend a lot of our time and energy making sure that MS does not interfere with the goals that the person came in with for their life.

And family planning becomes one of the most important ones because in general, we don’t want people on medications while they’re attempting to get pregnant or while they’re pregnant. So we talk about family planning a lot. MS tends to impact people in the prime of their lives. It is most commonly identified in people in their twenties and thirties, right when people are starting their careers, when they’re starting their families, their life is just really starting to take off. And often people envision those plans getting derailed by MS.

In general, we put a lot of effort into making sure that we get the patient’s life back on track and back where they want it. Because these are often young people, they’re not typically in the routine of interacting with physicians or asking questions about their health or things like this, and so it’s a little bit of a foreign interaction to them.

So putting people at ease—I find that breaking it up into multiple sessions often helps so that you can kind of let news sink in and then bring a very prepared mindset to the next visit. It gets really hard to understand and process things when you’re hearing such important medical news, and when you’re new to this as a patient with MS. And that’s okay.

We say it multiple times. I often will give them a couple of things just to take home—take-home thoughts—to say, “Listen, we know the diagnosis is correct, but we can handle this together. We’ve got this, and we’re going to take good care of you. And there are wonderful treatment options.” And hopefully at least those things people remember. And then we get into, in subsequent visits, some more of the specifics.

Pathak: We’ve got more insights coming up. Stay with us on Health Discovered.

Pathak: And now back to my conversation with Dr. Bermel. Let’s talk a little bit more about these treatment options and the importance of early intervention for MS. How do you start that discussion around initiation of disease-modifying treatments and therapies for MS with your patients? What do you want them to know?
Bermel: First off, I think, is some perspective around the advances that have happened in MS and the development of preventative medications for neurological disability. And I present MS as an autoimmune disease where the immune system is attacking the central nervous system.

So if you picture those white blood cells and proteins attacking the brain and spinal cord and optic nerves—it can attack in particular spots that tend to occur more or less randomly. If it attacks the optic nerve, we call that optic neuritis, and that’s what causes that vision loss that Hanna had.

And what we do is we get people on treatments that are often targeting the immune system to prevent those attacks. So even though the manifestations of MS are in the nervous system, the place where we actually affect the disease is in the immune system—to stop those attacks, returning some of that normal immune activity so that we can prevent immune attacks on the central nervous system.

Pathak: That’s really helpful. And then what can someone expect that first year with regard to follow-up tests and scans?
Bermel: Usually the first questions out of their mouths are, “What are the side effects?” That’s totally rational and reasonable because everyone is cautious, especially in young, otherwise healthy people in the prime of their lives, of causing any side effects.

We obviously talk about that, and thankfully the side effects of MS medications are so much safer and so much easier to take nowadays than they used to be. But I think it’s important to talk about the flip side of that too, which is: What is this supposed to do for me? And how will we know if it’s working?

We obviously monitor the patient clinically—asking them how they’re doing, have they had any new symptoms, repeating a neurological exam. At our center, we actually do what’s called neuro-performance monitoring. So every time somebody comes in, they do a two-minute concentration and memory test, and so we can actually plot the scores over time.

So we let them know that we’re following them clinically, but we also follow with testing. An MRI scan is generally the cornerstone of that because our therapies for MS are geared at preventing attacks or relapses and also preventing new lesions in the brain. So after starting a medication, we often get an MRI scan as a baseline, and then we want to follow that scan over time—roughly once a year.

Bermel: And what we want to see is complete stability of the disease. So our standards have gotten super high these days. We're really picky. And we want to see no new lesions on the MRI scan, no active lesions on the MRI scan, nothing lighting up with the contrast dye. And we obviously want a patient with no new neurological symptoms or anything that we can pick up on the exam.

Bermel: And so those are the things that we're monitoring for. And there are a couple of sort of newer, even higher-tech things that we monitor. A blood test called neurofilament light, which actually looks for broken-down nerve parts in the blood. We want that number to be close to zero. We try to keep it as close to normal in patients with MS as possible, and I’m happy to report that we can tell patients with MS that we're really aiming for them to feel as normal as possible and for these medications to not interfere with their life at all.

Bermel: So we do not want the patient to experience side effects or symptoms that would interfere with their plans for their life at all. We have success with that a very high percentage of the time these days.

Pathak: Let's talk more about some of the quality-of-life pieces that you were just alluding to. These people come in, they're generally in the prime of their lives.

Pathak: This is probably the first time they've been told they have a chronic condition that's going to require medications. They also want to know what are some of the other things they can do in terms of their lifestyle to optimize their quality of life—in terms of their nutrition, physical activity, sleep. Can you talk a little bit about some of those?

Bermel: For sure, and this is a huge topic of conversation, and it's something that we devote a lot of time to talking about, because you're right—people want to know what to do in their day-to-day life that can help with MS. I tend to contextualize that in the broader sense. Let's think about all the things that you could potentially do, and some of it involves avoidance of bad health habits that we know are harmful to MS.

Bermel: Smoking is actually one of the biggest risk factors for MS, and actually one of the pieces that can drive MS. And so we talk about smoking cessation and the importance of that. We make sure that people have primary care physicians and that they're managing the rest of their health. We talk a lot about how just because you have MS does not preclude you from taking care of the rest of your health.

Bermel: And once people have done that, then we can get to some of the finer-tuning things. I would say many people want to know about diet. We tend to recommend a Mediterranean diet. I also tend to present it as a heart-healthy diet, which is also a brain-healthy diet. We actually have specialized nutrition visits for patients with MS who have very detailed questions about this stuff.

Bermel: Exercise is a big thumbs-up for people with MS. We tend to recommend aerobic exercise, for sure. So get the heart rate up, get moving. Stretching and strengthening exercises are also very important, and a simple stretching regimen as taught by a physical therapist can be a really important part of somebody's MS wellness journey.

Bermel: And we'll often recommend initial visits with physical therapy, just to simply evaluate as a way to really instruct people what they could be doing at home, or what they could be doing in their gym or with their personal trainer that's more MS-focused—teaching people at different stages along their MS journey about which exercise types and specific exercises are best for them to do.

Bermel: People also have questions about supplements in general. One thing that we feel fairly confident recommending these days is vitamin D supplementation. We'll often anchor on that, and then oftentimes people will want to pursue other supplements or vitamins, and we really, unfortunately, have less guidance around that due to a lack of research.

Pathak: Are there other common misconceptions, things that don't have a lot of evidence, that you usually try to correct or improve the information that your patients have around some of these topics?

Bermel: There have been eras of misconceptions in the MS space, and all of these have been debunked by ample research, but I think that some of these are anchored in people's desperation, to be honest, and desire to fix something. We had really pretty minimal treatments for MS, but now that conventional medicine has really come a long way in figuring out how to switch MS off, I think that we're probably going to see less of these myths precipitating around because we just have such better options these days.

Pathak: Just to follow up on that point, because the medications are so effective, how do you approach the conversation when they're feeling great? When they are not having a flare, how do you talk to them about the importance of continuing with these lifestyle modifications and the treatment regimen that you've developed together?

Bermel: It's a great question. Our medications for MS—some of them are pills that are dosed once a day, maybe twice a day. Some of them are self-injections where someone has to use an auto-injector and inject a biological medication once per month. Some of them are IV infusions where someone would come twice a year to our clinic and get an infusion that takes a couple of hours every six months.

Bermel: And it's amazing how, even if people haven't thought about this before, they'll almost immediately gravitate toward one regimen or another. There are some people out there who can't remember to take a medication every day, and there are other people who say, "My gosh, I would never want to come to your center twice a year and get an IV. I'd much rather be at home and do an injection myself," or, "It's easy for me to take a pill once a day. I have no problem with that."

Bermel: For patients who have had very severe symptoms of MS in the past that have then recovered, it's actually amazing also that they stick to the regimen almost to a fault.

Bermel: And as the physicians, we're sometimes in a position of saying, "You're probably in a position now where you've beat this disease back." And people actually say, "You know what? My routine has been working for me and I'm sticking with it, and I really don't want to stop this because I am fearful that if I stop it, something is going to come back, or that I'm going to have a new symptom or a relapse."

Bermel: And so there's definitely a category of patients that appreciate the routine and appreciate the effectiveness of the therapy. I actually tell patients at the stage of a new diagnosis, "Listen, if we get this right, you're going to come to me five years from now and say, 'Dr. Bermel, are you sure that I have MS? Because I haven't felt anything new happen, and I've been doing this treatment—do I really still need to do this?'"

Bermel: And that's actually the most common category these days. It goes back to really being a hundred percent confident that we get the diagnosis correct at the beginning, and we talk about a plan for how long we need to continue this medication for and what the regimen should look like. But success sometimes, yes, leads to people almost being in disbelief—that's how good it is these days.

Pathak: I can feel your excitement around these newer therapies, particularly these therapies that are really focused on the immune system. What is really exciting you in terms of innovation for MS care going forward?

Bermel: All of our effective therapies are still focused on the immune system. They're largely focused on early MS and especially relapsing-remitting MS. For patients who have a more progressive form of MS, there's a tremendous need out there for treatments that slow progression of the disease. And really the holy grail would be turning the clock back and actually reversing neurological disability.

Bermel: Being able to remyelinate nerves or repair the nervous system. They include categories of therapies like stem cell therapies, which we've been experimenting with quite a bit—both immune transplant stem cell therapies (something called autologous hematopoietic stem cell transplant, where you bring somebody into the hospital and basically wipe out their immune system with strong chemotherapy and then transplant a new, young immune system) or something called mesenchymal stem cell transplant, where we give them doses of their own rebuilding or repair stem cells called MSCs or mesenchymal stem cells.

Bermel: We've done and are doing clinical trials in each of these types of stem cells. I'll tell you, there's still a lot to know and a lot to learn, and we're committed to doing that learning and doing the experiments. But we do not have it ready as a magic fix right now.

Bermel: Something that's on the near-term horizon—I think there's something called CAR T therapy. These are custom-engineered immune cells that get into the central nervous system and actually police the immune system from the inside out. It's a much more durable form of therapy. So whereas medications, you have to re-dose them, the CAR T cells stick around a lot longer and potentially are very promising for patients with the progressive form of MS.

Bermel: There are also new medications on the horizon. One particular type of medication that we may hear a lot more about in the next year is something called BTK inhibitors. They're a pill targeting a type of immune cell in and around the brain called the microglial cell that we think may be involved in progressive MS.

Bermel: We've made a ton of progress in MS, but we recognize that there's still a lot of progress left to be made.

Pathak: And how close are we to some of these more personalized MS treatments?

Bermel: Personalizing therapy for them is also something that we really aim for in the future. We don't know exactly what the correct approach is, and we don't have definite pathways for personalized medicine now, but we're investing in collecting the data.

Bermel: And we do know that individual biomarkers may really help us to differentiate one person with MS from another person and personalize the treatment plan. Obviously, the computing power and the power of large numbers of patients is helping us these days because we used to think of clinical care and clinical research as being very separate entities. But now we can actually do a lot of clinical research embedded in clinical care, where people getting routine best standard of care can also contribute data. And if you're on a stable therapy for MS even, and not wanting to change away from that just for the sake of research, you can still contribute to the efforts by getting involved in observational studies where we track and follow people over time, including some of their biomarkers and imaging and things that might give us clues about who's best for which medications, how do we know which medication is working in which patients, and how to personalize treatment choices.

Pathak: This has been a really exciting discussion. I'd love to invite you to address our audience directly, especially someone who's been recently diagnosed. What are some practical questions, goals of care, discussion points that they can bring to their next visit with their neurologist?

Bermel: In MS, we've long talked about the topic of shared decision-making. I would characterize that as partnership between the patient, their family, and the care team. We try to bring, as healthcare providers, a multidisciplinary approach. That means supporting not just as a neurologist in a room, but nursing. We have three staff health psychologists on our team to deal with the emotional aspects of MS so that we're not leaning into only medications, but also other approaches. Envision your team as larger than just your neurologist.

The second is that the world of MS has gotten quite complicated. I think getting to a place where a neurologist that's familiar with the advances in MS and comfortable with having these discussions is also very important for patients. And thankfully, virtual care, virtual visits, and things have made that more accessible. We do a lot of work around access in our center, and we know—we've studied it nationally—that the vast majority of the population does not live close to an MS center. But that doesn't mean that you can't still tap into the expertise of an MS center, either through virtual care or talking to your neurologist about whether they have contacts with colleagues that can help.

And I think that one of the biggest issues that we deal with in MS is uncertainty. I would say it's the big unspoken factor—that patients, when I encounter them at the beginning of an MS diagnosis, often fear the unknown. It's the “What's going to happen to me?” And I think getting past that and lending some predictability to things is probably the biggest factor. And so I would advise people early on in this journey to know that, at the beginning, yes, it feels like a rollercoaster, trying to get symptoms worked up and trying to figure out if MS is even the correct diagnosis. But I think battling away at that uncertainty, trying to take control over things, is a time-limited process. It does happen—you actually can overcome it and take control and feel much more like you have control over your MS, not that MS has control over you. And it's a really exciting area to take care of patients and to partner with patients in these days.

Pathak: Thank you so much for being with us today, and thank you, Dr. Bermel. This was a really important discussion—really important for us to learn what it means to be newly diagnosed with multiple sclerosis and how to move forward.

Bermel: Awesome. Thanks so much.

Pathak: My key takeaways from this discussion are that early MS signs can be subtle, so timely and accurate diagnosis is key. Starting treatment early, even before major symptoms appear, can slow down the progression. We also learned that young patients benefit most from a proactive plan that integrates lifestyle modifications, regular monitoring, and targeted medical therapy.

To learn more about MS care and Dr. Bermel's work, check out our show notes. Thank you so much for listening to this episode of the WebMD Health Discovered podcast. Please take a moment to follow, rate, and review our show. If you'd like to hear about a particular topic or ask a question for a future guest, email us at [email protected].

This is Dr. Neha Pathak for the WebMD Health Discovered podcast.