Angelina Cubero: Hi, I am Angelina, originally from the Lower East Side of New York. I'm 30 years old. I'm a toddler mom expecting twins, and I was diagnosed with MS in 2020.

Neha Pathak, MD, FACP, DipABLM: Welcome to the WebMD Health Discovered Podcast. I'm Dr Neha Pathak, WebMD's chief physician editor for Health and Lifestyle Medicine. Every week in the U.S., approximately 200 people are diagnosed with multiple sclerosis, or MS.

Pathak: According to the National Multiple Sclerosis Society, four times as many women have MS as men, and more and more women are developing it, with many women first experiencing symptoms during some of the most pivotal times of their lives—while starting college, launching careers, or building families.

Cubero: I grew up with parents that were divorced, and so when it was time for me to find care for these symptoms, it kind of just fell on me, so it took some time to get the diagnosis. I would say that I really started to look for answers in 2018, and that's when I was having persistent headaches all the time.

Cubero: And apparently the MRI didn't show any reason for the headaches, and in that MRI, you can also see the lesions. And they didn't tell me anything about that because that doctor wasn't looking for MS. And so they kind of just dismissed it and then didn't help me any further. And so perhaps I could have gotten diagnosed a lot sooner if they just mentioned, “Hey, this may not be for the headaches, but this looks like something else. Let's refer you.” So I'm really grateful for that doctor actually pointing me in the right direction.

Pathak: Today we'll explore the early warning signs to watch for, why prompt diagnosis can make such a difference in long-term health, and what the first steps look like after hearing the words you have MS. But our conversation doesn't stop there.

Pathak: We'll also address the deeper challenges patients face, like health disparities that delay diagnosis in underserved communities, the stigmas that may prevent women from seeking care, and the very real barriers that many patients deal with, including insurance, transportation, and language barriers.

Cubero: Well, first I will say the doctor that diagnosed me told me on a voicemail, and then when I saw her, she still kind of dismissed all the symptoms that I had and said, “This shows up on your MRI, but it doesn't show up on your symptoms.” And so I still felt like she was dismissing my MS even after the diagnosis. So I then had to advocate for myself to get a different doctor. And when I got the next doctor, he confirmed everything that I said.

Cubero: He validated how I felt, and that's when I started to actually get the help that I needed. They referred me to NYU in midtown—an MS center that had multiple doctors there that specialized in MS. It's an MS center, so it felt like this is my place. It's like going to a cancer center if you have cancer, and they're specialized in that—they know how to help you.

Cubero: They have all the resources, they have all the different providers that specialize in a therapy for your diagnosis. It was just really helpful to be there. I've connected with so many people of all communities, but it was really cool to finally find people within the Hispanic community or even within the Lower East Side that I just didn't even know had MS as well.

Cubero: Just finding people who you can connect with on multiple levels is really awesome when you go through a diagnosis like this. Because when I was first diagnosed, I did not know what MS was. It's really important to be your own advocate because your health matters and no one knows you better than yourself.

Cubero: Social media is a great way to connect with others to then be exposed to what else is out there. I found my treatment from a commercial, so just look around and see what's out there, then ask about it, and then do your research and find a good community and support system. And everything's gonna be okay.

Pathak: Most importantly, we'll share how becoming your own advocate, preparing for medical visits, and connecting with peer support can empower women with MS to navigate their journeys with confidence and community. More on MS when we return. Welcome back. Let's continue unpacking the facts. First, let me introduce my guest.

Pathak: Dr Mitzi Joi Williams is a board-certified neurologist and a fellowship-trained multiple sclerosis specialist with over 15 years of experience. As the visionary behind Joy Life Wellness Group, she's become an internationally recognized leader in MS care, especially for underserved communities. Dr Williams is passionate about educating and empowering patients to take control of their health, and her work is backed by years of clinical research, public health initiatives, and community advocacy.

Pathak: Through her foundation, she continues to push for greater diversity in MS research and equitable health care access for all. Welcome to the WebMD Health Discovered podcast.

Mitzi Joi Williams, MD: Thank you so much. I'm very excited to be here.

Pathak: It is great to have you. I am very excited to jump into our conversation, but before we do, I'd love to ask about your own personal health discovery as it relates to your research. What were some of the questions or issues that you encountered in taking care of patients that inspired your work?

Williams: I think the first question that got me into research was really looking at the populations that I was serving and realizing that they didn't quite match up with what I learned during residency. So we've always typically thought of MS as a disease of young women of European descent, but living in Georgia, first in Augusta and then in Atlanta, everybody in my lobby didn't look like that.

Williams: So I had many African American patients. I had many more men than we previously thought. So I'm like, this doesn't quite make sense. And then when I looked at the characteristics of some of my patients and saw how they had very aggressive disease despite being treated, it really made me begin to wonder: Are there differences in certain populations? And why don't we really have enough data about these people that are being affected by multiple sclerosis?

Williams: And then the second part is looking at a lot of our very large clinical trials and realizing that, again, those populations are very homogeneous. So many of our trial participants are from Europe, but didn’t reflect not only the characteristics of the patients that I was seeing, but even the treatment patterns.

Williams: So it became a little bit more difficult to apply those studies to what I was seeing on a day-to-day basis. And so that is the other piece that really pushed me to start working on increasing diversity in clinical research — making sure that the populations in our trials really reflect those people who are being served by the therapies and the interventions that we’re creating.

Pathak: That’s amazing. Talk to us a little bit about younger women of other races. What are some of the earliest symptoms that you might see in this general population that we commonly think about? And then what do we see as differences in other populations?

Williams: Yeah, excellent question that we talk about very frequently.

Williams: So when we look at the data, oftentimes the starting symptoms of MS, which are common across all groups, can be things like optic neuritis, which is inflammation of the nerve of the eye, which can cause either decreased vision. Some people have complete loss of vision and some people have decreased color vision, or also will be accompanied by pain in the eye and difficulty with pain with movement of the eye.

Williams: And so this is a really common first symptom of MS. We see it in all populations. In, for instance, the Hispanic and Latino population, we may see this more commonly as a first-onset symptom. In the African American population, sometimes we may see people with bilateral optic neuritis or more severe optic neuritis where they don’t recover.

Williams: So those are things to look out for, but many of the symptoms of MS can actually mimic other conditions, which is why it’s so important for young people to know about MS. Because the symptoms can be dismissed as a pinched nerve. Or people may think they slept wrong and they have numbness that lasts for several weeks and then it goes away.

Williams: And so we really want to stress the importance of if someone is having neurologic symptoms, even if you are young and otherwise completely healthy, which is the demographic that MS often affects. People always come in and say, “I’ve never had any medical problems. There’s nothing wrong with me. How did this happen?”

Williams: And so it’s important that people recognize: if you’re having neurologic symptoms — you get numb, things are tingling, something’s not moving, you can’t walk, you can’t see — go get evaluated, because it could be the early warning sign of multiple sclerosis.

Pathak: So that’s really important information. What is the timeframe for someone who does wake up having slept on their arm, versus someone where you’re like, if it has gone past a day, what is that window in your mind?

Williams: So symptoms with MS — the initial episodes, which are what we call relapses — often will come on. Sometimes it’ll be sudden. Sometimes it’ll be a little bit more gradual. Like someone will say, “I woke up and my vision was a little blurry, and then over the course of the day, it got worse.” Or, “I woke up and I had a little trouble walking, and that got worse.”

Williams: So it can progress over the course of a day or several days, but typical relapses come on, they last for several days to weeks, and then they may completely resolve, or they may get better or see some improvement and not get completely back to normal. Again, at least 24 hours will classify as a relapse, and then usually it’s several days to several weeks that the symptoms are there.

Pathak: Okay. Really important. So tell us why it’s so important to diagnose MS early, especially in women who are, as you mentioned, generally healthy. Probably starting families, careers, or in the midst of a time in their lives when they’re not thinking about health issues.

Williams: We did not have any approved therapies for multiple sclerosis until 1993, and from 1993 to now, we have over 25 — upwards of 30 — different treatments.

Williams: So what we do know is that when we can diagnose people early and start them on effective treatment early, we can potentially prevent disability. So there are these natural history graphs that show us basically what happens when people aren’t treated — because we had many years where there were no treatments — then we know what happens when people are treated late.

Williams: For instance, those people who were diagnosed in the eighties or seventies and then were able to partake in therapy once it became available. Now we have data showing that when people can start therapy right after they're diagnosed, meaning in the first six months, three months to a year, we can have better outcomes in the long term than we do if they start treatment late or if they don't start treatment at all.

Pathak: So what are the first steps after you've made that diagnosis? What are the first steps in your algorithm to decide on the treatment pathway, especially if someone has never had a prior treatment?

Williams: It's a lot. So I try to personally break up discussions about diagnosis and treatment into several visits, because you're dealing with something that is a life-altering diagnosis. Sometimes it takes a little bit of time for people to take it in. Then we're talking about treatments that may affect the immune system. In some cases, they could potentially cause very serious side effects, and we don't want people to have to make a rushed decision. So I'm a huge advocate of shared decision-making, meaning I sit down with my patients, we talk about what some of the options are, and we try to narrow those down.

Williams: I send them home to do research with their families and loved ones and talk about it. Then we meet back up, and we talk about whatever questions they have, and then we decide on treatment. So I think that it is a several-step process. That first step is looking at that person's characteristics of their disease—how severe it is, what symptoms they have.

Williams: We look at the side effects of the medicine, we look at how often it's given, and we really try to put together what we think will be the most effective option, as well as what patients are willing to tolerate, what fits with their lifestyle. And we try to put that together and come up with the best treatment plan from there.

Williams: I think that it's very important for people to recognize that there are also things they can do to keep their brain healthy and combat MS. We talk a lot about brain health in our clinic—about diet, exercise, sleep. We want to talk about medication and therapy, but we also want to talk about natural and other approaches that we can do in combination with therapy to get the best outcomes.

Pathak: That's great. Talk to us a little bit about the health inequities that you've noted in time to diagnosis, time to treatment for MS, particularly in the Hispanic community. I'd love to talk a little bit more about that, but just if you could start off generally and then we'll talk about that specifically.

Williams: Absolutely. I think one of the important things is that I do feel like the situation is improving. However, when we think of certain diseases and we think of certain conditions, we have a picture in our mind of what that most likely patient looks like. In many populations, I think particularly those who do not fit that young woman of European descent picture, people are missed because their symptoms may be atypical.

Williams: Or even if they have that textbook symptom, somebody has to take that extra step and get that MRI. There are also people who may have been talked to about abnormalities in their brain, and because their symptoms went away and they weren't really educated, they're lost to follow-up. So that's another reason why some people may have more aggressive disease.

Williams: There are several studies that we're looking at. One that I co-lead is called the CHIME Study. It is a study looking at one of our therapies that is focused specifically on Black and Hispanic people living with multiple sclerosis in the U.S., and we're trying to answer some of these questions about whether people inherently have more aggressive disease, or if it’s because they are not brought to medical attention as early. For people from the Hispanic community, could there be language barriers that affect their ability to interact with the healthcare community? If someone is an immigrant, are there concerns about their immigration status when they're engaging in the community?

Williams: There are many different barriers that may affect clinical outcomes, particularly as they relate to social determinants of health, that may lead some people to have worse disease than others. So we're trying to get the answers to these questions.

Pathak: Stick around—more answers to your questions after the break.

Pathak: And we're back. Let's keep the conversation going. You bring up something really interesting, which is when you have an incidental finding—so you're looking for something else, and you see something that may be consistent on imaging with MS, but the person does not at this current moment have symptoms. What do you want people to take away in terms of if there is an incidental finding, how do you hold onto that and say, “Okay, this is a part of my history. Now I need to share this with my doctor or my medical team going forward”?

Williams: The phrase I want to use is, don't get lost in the sauce, right? I really want people to recognize that if there is an abnormality, our best-case scenario would be that people come in and I follow them with MRIs for several years, and we say, “You know what? You've not had a symptom. You don't have MS. Go and live the rest of your life.” And that does happen in rare cases, but more often than not, the actual lesions or damage precede the symptoms.

Williams: Now that MRIs are much more accessible, the key is just to continue to follow up. Even if you're feeling well, continue to follow with that neurologist. We don't necessarily want it to rule your whole life, but make sure that you're following up and checking in periodically to make sure that those symptoms or those lesions aren't continuing to get worse. And then if we have a symptom, we already know what's going on, because we have someone who's aware of those MRIs and is following them.

Pathak: I'd love to talk a little bit about socioeconomic status, which is often intertwined, but do we have any studies or information about how that plays a role in the quality of care someone receives, the timeliness of care, and the timeliness of starting treatment?

Williams: So socioeconomic status does play a huge part in people's access to certain providers as well as their access to our disease-modifying therapies.

Williams: I think that there are several kinds of extremes where we have difficulty getting access. So for people who don't have insurance, it can be difficult to see a provider, but it can be very easy to get on treatment because there's a lot of support from the different companies and industries to get people on treatment.

Williams: Then we have those who have private insurance who may have access to a provider, but depending on the formula of their insurance, they may not have access to the best treatment that they come up with their doctor. But more often, we have folks who fit in the middle, who may have some form of insurance, but either it is very limiting in terms of the things that they can access in terms of the providers they can see.

Williams: And it's expensive to go to the doctor. There are copays, sometimes there's transportation. One of the biggest challenges or barriers that we see is actually having access to specialty care. So within every field—neurology and other fields—there are subspecialists. So sometimes seeing a general neurologist, which many of them are very good at treating MS, may not be exactly what someone needs, and they may need to see a specialist.

Williams: And so we're having a lot of difficulty with people getting access to subspecialty care, where they can really focus on that shared decision-making with someone who has expertise in all of these treatments and all of the different interventions related to MS.

Pathak: And we often think about how we want to help patients be advocates so that they can find and access these systems.

Pathak: But I want to take a little bit of a flip-side approach right now. How can healthcare providers and healthcare systems really be thinking about closing the gap in MS outcomes across different communities?

Williams: So that is a big question. I don't know that we have enough time to answer all of it. But one thing I would say is first, being aware, recognizing that social determinants of health can sometimes affect patient outcomes more than the medication that we give them.

Williams: And realizing that, yes, we try to do the best care that we can. We try to give people prescriptions for symptoms, etc., but the prescriptions are not enough to ensure a good outcome. There was a project that I was really fortunate to work on with Prime CME, where we actually surveyed multiple sclerosis clinics.

Williams: We surveyed the providers, we surveyed the patients. We asked about things like priorities in care, barriers to access, etc. And it was very interesting to recognize that sometimes what the providers thought was a priority to patients actually was not as much of a priority to patients. Then also to recognize that at the end of that project, we had each clinic sit down and, for an hour, do a feedback session, talk about what they can do in their community to address social determinants of health, and you will be amazed at what people can come up with if they just take a little bit of time to focus on this issue.

Williams: Solutions will be local, and it doesn't have to be something that changes the world, but it can be something very small that can make a huge and lasting impact.

Pathak: I think that is fantastic, and just so beautifully said. I think really your point about solutions being local and thinking about the population you serve.

Pathak: So I'd love to sort of dig down now into this particular population. Can you talk a little bit about some of the unique barriers that Hispanic women may face when they're seeking care for MS, whether that's from diagnosis through ongoing treatment?

Williams: Language is not the only barrier, right? But it can be a barrier depending on if someone is primarily Spanish speaking, or even if that person is primarily English speaking, their support system may have a language barrier.

Williams: So MS is a disease that affects the whole family. So if one person understands and other people don't understand, there's still going to be an issue with continuing to follow through on care plans and other practices, etc. And so I think it's recognizing that family is a big part of decision-making and including them in the decision-making process.

Williams: I think another barrier, again, is making sure that providers are looking and understanding the way that people are describing their symptoms. Often the language that people use to describe symptoms may be different depending on their cultural background. And so we have to kind of sit and make sure that we're understanding what people are saying to us.

Williams: Another thing is that there can be potentially religious beliefs or other beliefs that maybe they did something to cause their MS. And so making sure that we as providers have an empathetic and understanding ear and don't just completely dismiss what someone's saying, but listen and try to provide the evidence that we have and the scientific backing that we have about how the disease process works, to try to harmonize some of those beliefs. Because when we uniformly dismiss, then someone would potentially be lost to care because they feel like they're not being listened to and heard.

Pathak: And I imagine that you are in caring for MS, not just caring for MS. There are other conditions that can travel along. I'm sure there are concerns around mental health impacts with a new diagnosis that carry their own stigma and sort of cultural sensitivities. Could you talk a little bit about the co-attending comorbidities that come along with MS?

Williams: So we're often trying to look at things from a holistic view and say, all right, how much of this do we think is related directly to the disease process? And how much of this is related to having MS. Over 50% of people with MS will have depression at some point during the course of their diagnosis. So mental health is extremely important.

Williams: We also know that mental health affects physical health, so we talk a lot about stress because people can have what we call pseudo-relapses due to stress. And so MS care actually encompasses quite a bit. And then I think the other piece is making sure that we have a good team around us, whether it is bringing in our psychiatrists or psychologists, whether it's bringing in our other specialists, whether it is physical therapy or occupational therapy.

Williams: So we're always looking at making sure that we're creating the best team for that patient. And so it definitely encompasses many different things aside from just the CNS disease. So I spend a lot of time educating. I am a big advocate of people being empowered with knowledge and understanding their disease process to the best of their ability.

Williams: Now, I don't expect everybody to walk out of my office and be a neurologist. But I do expect you to, in your own words, be able to describe your disease process and what's going on with you, and why we're doing what we're doing in terms of creating the team. You know, I'm very practical from the beginning.

Williams: I tell everybody they need a primary care doctor, so we make sure that they have a primary care physician—that's number one. So in addition to your neurologist, I think they are equally as important in caring for the holistic view of MS. And then, as symptoms may arise, we add different people to the team.

Williams: There are some people who just need their primary care and the neurologist, and they're doing really great. They may not have almost any symptoms from their MS, and that's really our goal. I think the other piece in helping close the gaps is making sure that I, as a healthcare provider, am aware of what resources are available.

Williams: So I have my own homework. What type of work or educational resources do they have available that I can point patients to? Because somebody's done a webinar on disability, somebody's done a webinar on mental health, somebody has done a podcast on this topic or that one. And so how can I direct them to accurate and sound information in the midst of them going through this journey with their MS?

Pathak: Amazing. So help us understand how, in normal life, in daily life, someone can advocate for themselves and ensure that they're really finding optimal strategies, optimal ways to advocate for themselves, for MS care.

Williams: So I think the first piece of self-advocacy is doing your own research. We do research every day if we want to find a new hairstylist, if we want a new car.

Williams: If we want to find a school for our children, we go online, we ask for recommendations, we talk to our friends. We'll find a Facebook group. And so just as we have this effort in all of these other areas of life, we need to have even more effort that we put in when it comes to our health. Now, sometimes at diagnosis, people aren't ready.

Williams: For that, but certainly, as soon as we are able to kind of accept, I want people to dig into good sources of information to educate themselves. That is the number one way that you can be an advocate: educate. I think the second piece, particularly for our young women, because women have this superwoman complex, right, where we feel like we should be able to do everything for everyone and not need rest, and not need any help.

Williams: And I think that people have to first also be honest with themselves if they're having challenges related to the disease. Recognizing that and realizing that there are ways that we can work around that, but not just ignoring it, is the number two. Number three is asking for help. And this is a huge issue, particularly for all of my women patients, but particularly the younger ones.

Williams: If they have kids, if they have other people, they don't like to ask for help because they don't want to feel like they're a burden, and they don't want to be dependent. I think that is probably the—even though it's number three on my list—the number one thing that people can do: ask for help when they need it and not be afraid to do that or feel like they are a burden or a problem because they're doing that.

Williams: It actually strengthens their ability to be able to do everything else when they ask for help.

Pathak: And I think it's also a service to the people around you because they want to help. They just don't know how. Any thoughts on advocacy groups, peer support groups, community organizations that patients can turn to, to feel less isolated, potentially, and more informed?

Williams: Community is extremely important.

Williams: Particularly when we're talking about a rare disease, a million people in the U.S. live with MS. And compared to the total population, there's a small number of people, but it can be a very debilitating disease and very devastating if we aren't able to catch it early and treat it effectively. So people need to know about it.

Williams: So I always encourage my patients to become involved in the MS community because, as much as your healthcare providers and your family members love you and want to help you, none of us know what it feels like to have MS. The only person that knows what that feels like is someone else who is living with MS.

Williams: So there are great organizations, including the National MS Society. There is the MS Association of America, the MS Foundation. There has been a rise of patient-run advocacy organizations, which I'm very excited to see, such as MS Views and News, as well as We Are Illmatic, an organization for Black women with MS.

Williams: So there are many different advocacy organizations where you can find your sense of community. And the other thing that I encourage people to do is that if there's a group that you feel like needs to be created and you don't see it, you might just be the person to get it started. So there's also nothing wrong with starting a local support group or an activity-based group if there's a need that needs to be met and you don't see it there.

Pathak: This has just been such a powerful conversation, so many practical tips. So I'd love to close the episode by giving you the floor and asking you to speak directly to our audience if you have your top three tips, top three takeaways you'd like someone listening today to take away from our time together.

Williams: So I think the top three things I would like people to take away are: number one, you are your own best advocate. You are a central member of your healthcare team. Oftentimes, when people think of a healthcare team, they think of the people outside of themselves—the doctors, the nurses, et cetera. But you are a member of your team.

Williams: You have agency. You're able to make decisions, you're able to ask questions, and ultimately, we always want to make sure that whatever treatment plan we're doing fits your lifestyle and your needs. Number two, I would say educate yourself. You know, look at trusted sources of information. Engage with community advocacy groups to learn about anything that you want to know about.

Williams: There are articles that have been written on it. There are people that are working on it. And so make sure that you educate yourself about your disease, because you will be talking about your MS no matter who you see within the healthcare system outside of your neurologist. And then the third thing that I would say is to understand that community is important, and being a part of a community is essential, I think, to people really thriving with MS.

Williams: Whether it is a formal support group—that's not for everyone—or whether it is just finding your MS Buddies from different events that you go to, having that community support from other people living with the condition really has, I think, been a game-changer for most of my patients who are doing really well.

Pathak: Thank you so much. Really appreciate your time, and thank you so much for this conversation.

Williams: Absolutely. It is my pleasure. Thank you for having me.

Pathak: We've talked with Dr Mitzi Joy Williams about multiple sclerosis. My key takeaways from the discussion are: don't ignore neurologic symptoms. Early recognition and diagnosis are critical.

Pathak: If you have vision changes, numbness, tingling, or trouble walking that lasts more than a day, don't brush it off as stress or just having slept funny. Getting checked early is key because starting MS treatment sooner can help prevent long-term problems. Empowerment and advocacy drive better outcomes. As a patient, you're a central member of the healthcare team.

Pathak: You are your strongest advocate. Learn as much as you can. Ask questions, bring your family into the conversation, and connect with support groups. All of these actions can make living with MS more manageable and less isolating. You don't have to go through MS alone, and taking an active role in your care can make a big difference.

Pathak: Representation in research matters. For too long, MS studies focused mostly on one group of patients. Even though the disease affects people of all races and backgrounds, more inclusive research means better treatments that work for everyone. Increasing diversity in clinical trials ensures that therapies are safe, effective, and equitable across all communities.

Pathak: To find out more information, make sure to check out our show notes. Thank you so much for listening. Please take a moment to follow, rate, and review this podcast on your favorite listening platform. If you'd like to send me an email about topics you are interested in or questions for future guests, please send me a note at WebMD podcast at WebMD.net. This is Dr Neha Pathak for the WebMD Health Discovered Podcast.