Advocating for a Multiple Sclerosis Diagnosis with Comedian Kellye Howard

Episode Transcript

Dr. Correa:
From the American Academy of Neurology, I'm Dr. Daniel Correa.

Dr. Peters:
And I am Dr. Katy Peters. And this is the Brain and Life Podcast.

Dr. Correa:
We're so glad to have you joining us again on the Brain and Life Podcast. Katy, I was wondering, aside from giving lectures, a presentation at a conference, have you performed on stage for a show before?

Dr. Peters:
Well, Daniel, yes I have. And I love performing. It's pretty obvious, I know. Depending on age, I did dance from ages five to 18. I just loved doing it. I then was a cheerleader in high school and college. Loved doing that. So I have zero, no fear of performance here.

Dr. Correa:
Wow.

Dr. Peters:
[inaudible 00:01:01].

Dr. Correa:
Yeah. I mean, I grew up doing sports and I did choir and dance, but I've always had a little bit of anxiety and adrenaline that builds up before a performance or before even having to give a lecture or public speaking. But I think early on, like with sports maybe, I learned that ability to take some of that energy and adrenaline and to help focus me and give me momentum and the energy for things like a performance or to bring some of the energy at the beginning of a lecture, because sometimes you got to wake up the students who are sitting there waiting.
But I think about it also sometimes not only as an individual going to a clinic as a patient, but then also on our side when we're interviewing and talking to a patient, that there's a little bit of a stressful anxiety and performance that has to happen. When we go to ask them in our clinic or at the hospital, "What brings you in?" But they know they've been waiting weeks or something's been going on and they've just been waiting to see the right person in the ER. And there's so much pressure because they know you are busy and you have to go somewhere else. And so they really want to get what they need. And that pressure really impacts. There's that stress of effectively communicating your symptoms, what's concerning you, what conditions you're worried about and who they actually are as a person beyond just, oh my right arm feels weak.

Dr. Peters:
I agree.

Dr. Correa:
Yeah. I mean, it's just so much going on. How do you handle that either on your side, in clinic as a doctor, or when you go see doctors yourself?

Dr. Peters:
I think this is where the practice of medicine really comes in and as you get to be a more seasoned physician, I think you have more finesse at doing those things. I think it's a really interesting comment that you bring up. I always remember that the patient has their own agenda, not in a bad way, but really just these are the things that I need to check mark. These are the questions that I need answered. And they have their own agenda. Maybe their loved ones that are with them, they also have a different agenda than the patient does. So I think it's really important to really let them talk, let them tell their story, take time for them to talk. And when you need to give them information, I like to in a way set the stage. I like to ask permission. "I need to talk to you about what this pathology means or what the MRI shows. Are you ready to hear the information?"
And I think what's nice about that is I feel like I give them time to tell their story. Now it's my time to come to the stage and give important critical information.

Dr. Correa:
I like that. I like the idea of giving a little bit of a heads-up and warning in a way and asking permission. Because sometimes we can jump right into asking things about someone's sexual history, about very personal aspects of their life. They may not already be in the mindset that that matters in the situation. So really throw them off.

Dr. Peters:
We call that the knowledge dump.

Dr. Correa:
Yes. I try to break myself off because if we're seeing someone, often we have a one-line description or even just a statement as to why they're coming to the clinic and the computer system. Or when someone sent us a question with that referral or consult, it's a left arm weakness or it's a seizure. But instead of going and being in the rhythm of asking just about that problem or that symptom. I try to break myself out of that, and I lead in asking with the setup that I want from the person, asking just about if they can introduce me to who they are, what matters to them, and how what's going on has impacted them and their function. I mean, we're often trying to get to that in the questions and having an understanding when someone says their legs are weak, well what does that mean? Have you had challenges getting up out of chairs or walking and going upstairs? And that gives us a sense to a greater extent what parts of the body are impacted.
But I think beyond just the context of stairs, really having an understanding of how it's impacting the things that they like to do and they love really helps us and helps me not start off right off the bat thinking, oh, you had a seizure and you've been feeling weak afterwards and let's just focus in on that. We'll get there. But let me start with having an understanding about who you are.
And I think our discussion today with Kellye and our guest really helps move forward this thought and idea. She's dealt with this both the challenge of performing on stage, literally as a standup comedian, but also navigating and seeing doctors for mental health symptoms and sensory symptoms that were going on and issues with function in her arm that were all later put together as a diagnosis for multiple sclerosis. That pathway can often be a challenge. And so make sure to listen also to the return of one of our past medical experts, Dr. Lilyana Amezcua. And we continue more of a discussion about the challenges with the diagnosis of MS and some of the social and structural challenges that impact the community living with multiple sclerosis, and the work that's being done around the country, both at research centers and in community and advocacy groups to help those with MS and many others live better with their own abilities.
Welcome back to the Brain and Life podcast. I am looking forward to even a few laughs here with you today to help us bring out a smile, a laugh to this day, while also expanding our vision of unique experiences for those living with MS. Today we are joined by comedian and performance artist Kellyee Howard. For the Comedy Lovers in our group and listeners, you may have seen her on Comedy Central, Last Comic Standing, LOL Live or Nickelodeon, or maybe if you're in the Chicago area, on stage at Second City, Steppenwolf Chicago Comedy Festival. And now since everyone is streaming TV, you could also catch her on Power IV on Starz. Thank you so much, Kellye, for joining us today.

Kellye Howard:
Yes, thanks for having me. I'm excited.

Dr. Correa:
So I wanted to go back. I mean, not all of our listeners may have seen you on stage or on TV, so tell us a little bit more. Who is Kellye Howard?

Kellye Howard:
Oh God, that's a lifelong question. I have no idea. This is my struggles. I'm just, I'm an artist. I'm a creative artist. I like to say that I'm a multifaceted creative artist and my goal is to entertain, educate, and empower. So as long as I have those three E's in what I'm doing, I feel somewhat aligned to who I am, whoever that is.

Dr. Correa:
And I mean, I see you've done a lot in the Chicago area. At core, do you feel that you are from Chicago or where do you feel like it speaks to who you are?

Kellye Howard:
Well, from my core, I'm from Harvey, which is a suburb right outside of Chicago. And yeah, that's my core. That speaks to me most definitely. In fact, the further I try to get away from my habits that I've learned in Harvey, the more they reel me back in. So I think I'm definitely a Harvey girl, but Chicagoland area. And I performed here for going on 20 years now here in Chicago. And then I moved to LA for a little bit of time and I had some other stints in other spaces. Like I was in the military, I was an electrician. And so I've done some other things with my life, but it all boils back to entertainment and creative arts in some capacity. Yeah.

Dr. Correa:
And then in finding your way, what made you choose to do performance and creative and comedy?

Kellye Howard:
So comedy was just gifted to me. Somebody was like, "You're funny. You should do standup. Would you like to do a spot on my show?" And that's how I started standup. Yeah, I was in school for acting. I always knew that I wanted to be an actress from my very first audition I went to when I was eight years old, my grandmother took me, it was a Palmolive commercial. I failed terribly. I did not understand what Palmolive or washing dishes was at that time. And I didn't get booked, but I had a, it was a spark lit in me like, oh, this is it. This is what I should be doing. I should be getting rejected by people on a regular basis. This is exactly what I want for the rest of my life. And so I always knew I would be an actress, but as far as comedy, I just tripped into it and was good at it very early on. And so I'm stuck. Yeah.

Dr. Correa:
Now, I mean, I think we all imagine the first time getting up and doing a standup set, just the total bomb and falling apart. I mean, was that your experience starting off? Or-

Kellye Howard:
No.

Dr. Correa:
Wow. So just fire from the beginning.

Kellye Howard:
From the beginning. The first time I ever stepped on stage, I got a partial standing ovation, partial meaning everybody that I invited stood up for me. But the rest of the audience definitely loved me and so much so where the host booked me the very next week for a show out of town, paid me $30, which is unheard of to be getting paid anything as a standup comedian in your second time on stage. So I was paid my second time ever on stage.

Dr. Correa:
And have you found this success and fire always with comedy or later on were you awoken to the fact that, oh, it doesn't always come that well?

Kellye Howard:
It doesn't always come that well. In fact, so I did that show, got paid $30 and then I took that $30 and immediately moved to LA. I was like, I'm about to be famous. This is too easy. I got the formula, it's done. Moved to LA and didn't do a drop of standup because I was in a new city and it was warm and I had never lived anywhere that was warm during Christmas and things like that. And so I just was working. I worked for the Department of Homeland Security at the time.
And so I was just really working and enjoying living in LA. And then I did a, what they call a cattle call for Pauly Shore, Hot Girls of Comedy Minding the Store. It was on TBS, and it was all these women standing outside and you had one minute to make Pauly Shore laugh when you got in front of him on the stage. And I had him cracking up laughing. He booked me, I got paid $800 to do my first TV spot on TBS. And then when it aired, I was completely cut out and all you saw was me waving at the end with the rest of the women. And so that was my first reality checkup. Oh, I don't know what I'm doing. This is more to what I think it is than just getting on stage and being goofy and funny and shucking and jiving or whatever.
So that was my first reality check. And I moved back to Chicago because I had a young daughter at the time and I was like, if I'm going to do this for real, I need to be in a place where I have support for my daughter at night so I can hit these comedy stages. So I moved back home in 2006 and that's when I count when I started standup is in 2006 because I had only been on stage maybe four times prior to that and I hit the ground running. And so from 2006 I was very like, let's write a joke, let's craft it this way. And it was a lot of fun and I was doing well-ish. But as life starts to happen, right, kids, diagnosis, marriage, all these different things, you start to realize that my thoughts on this stage is actually people actually laugh but they learn through laughter. So I can't just be up here cracking jokes without any substance. And then that was another reality check years after having done stand up.
And then my third reality check was when I started teaching at DePaul because I teach solo performance for comedy at DePaul and they were like, "Yeah, we need you to teach these kids how to be funny." And I was like, "Uh, they should just go up there and be funny." So that's when I discovered, oh, there's actual tools and things and structures that we can put in place, and I had to learn that all over again. So this has been a long journey of my comedic discovery because I never thought I would even be a comedian. So this has been interesting.

Dr. Correa:
And throughout all these years of discovering your comedy and just where art fits in your life, what was your life growing up as a young adult in terms of your health? Did you have a history of health challenges or other issues before anything ended up being called a diagnosis?

Kellye Howard:
None that I knew. I mean there were probably things there that I was oblivious to. There were probably aches and pains. And I had migraines, that was something I was diagnosed with at age 16. But then I come to find out at age 33 that those weren't migraines. They were actually tension headaches and I had clusters of knots on my back and on my neck and all of these things. And so I think that just moving through the motions of living, you don't really stop to think, wait, what's going on with my body? Because six months before I was diagnosed with any neurological disease, I was diagnosed with bipolar mania. And that was right after the loss of my 15-month-old daughter. And so I went through this tragic loss emotionally, which, and by the way, my 15-month-old daughter was my second child to pass away. I had a son pass away when I was 16, which is when I got diagnosed with the migraines.
And so when I look at trauma and I look at the diagnosis and I start putting two and two together, trauma lives in the body, right? And so a bunch of unresolved grief and things that I just wasn't aware of that was happening in me. I didn't have the coping skills, I didn't understand it all. It became more clear once I was given diagnosis because then I was able to do a little bit more research on my own and say, oh, oh, this is what grief looks like. Oh, this is how it shows up in the body. Oh, tension, okay, migraines, tension headaches. Oh, got it. Started when I was 16 when I lost the son. Oh, interesting. Right? All of these things started to, it was like a puzzle that was put.
I always tell people with diagnosis, it's not a death sentence. It's actually a beautiful thing if you look at it for what it is. Like, oh I have information now I can run with this. And that's what I've always done with anything that's been told to me. It's like, I don't have to believe it. I can do a little research on my own and decide if that's true for me.

Dr. Correa:
And looking back, I mean because you said you got a mental health diagnosis a few months before, but before all that, what was changing for you in your life that made you feel like I have something else going on or I'm concerned about something going on? I know you mentioned the loss of your child and I'm so sorry, but was it part of that process while you were getting checked out by other doctors or were there other issues that you were pursuing questions about?

Kellye Howard:
So I had just gotten married, we lost our daughter, and then we got married, and then I had health insurance, which is something I hadn't had as an artist. So that health insurance led me to start having these conversations with doctors. And I wasn't aware of, like now I know the difference between a psychiatrist versus a therapist versus all these different tiers of mental health work. I wasn't aware of those different tiers. And so I just look up psychiatrist, you go to a psychiatrist. A psychiatrist is going to try to give you a diagnosis. And when I walked away from that diagnosis is when I started to get more curious about, okay, how much of this is a chemical imbalance and something that I should be peeling the onion layers back of trying to really get to the root of what it is? And I think that's what got me curious to start going to different doctors.
Then physically, I would run all the time. I've been a runner since the military because we would have to run two miles a day anyway. And so I'm a runner. Well actually before that I was in track too, but I would run and so I would feel the zapping feeling shooting from my head all the way down to my feet when I looked down. And so I went to my general practitioner and I was like, "Hey, heads up, I have multiple sclerosis." And she was like, "What?"

Dr. Correa:
Heads up?

Kellye Howard:
She was like, "Kellye, you are a runner. It's probably a pinched nerve. It's probably..." But I was like, "Nah, I've done all the research online and this particular symptom where it zaps from the top of your head all the way down to your feet, the only thing that keeps flipping up with this symptom is multiple sclerosis. I need an MRI." And so because I had health insurance, I don't care what it was, I don't care if my finger was tingling for five minutes, now I'm going to the doctor, I want to know why this finger is tingling. I could have just slammed it and I've been like, something's wrong with this finger. But I was very curious at that point. And because I had health insurance, like I said, I would go to all types of doctors, all types of different therapies, just to be more, I was curious about me. And so just learning more and more that I could about me and what was going on inside of me. Yeah.

Dr. Correa:
And before the MRI, aside from the zapping sensation shooting down your body, had you already had issues or experiences with any other coordination changes or use of one arm, leg? You hadn't had any episodes in the past before that where you lost some function for hours or days? This was like the first one really to creep up?

Kellye Howard:
Not to my knowledge. I can't think of anything in particular where I was like, oh yeah, that might've been a symptom. The only thing I can think is the migraines. But aside from that, nothing else physically because I was very active, always working out. I didn't eat the best. But once I started doing the research that I needed to do for multiple sclerosis, I started to change my diet dramatically. But yeah, I can't think of anything that may have moved my curiosity.

Dr. Correa:
What happened after the MRI? Your primary care doctor got you the MRI, so you had more information?

Kellye Howard:
I begged her, begged her for it, begged her. Because she'd be like, "No, Kellye, you don't need..." I begged her, got the MRI, lesions on my brain, lesions on my spine, very evident, immediately booked appointment back to my general practitioner, not because I wanted to be like, "Oh my God, let's talk about this." Only because I wanted to be like, "Told you so. I told you." Right? And so I just went back to point the finger and then I immediately switched general practitioners. I have a voice, so listen to me. I told you this is what this was. Thankfully, I was very adamant about pushing her for that MRI because had I not been, had I been like, "You know what? You're probably right." It probably would've been so many more years before I had figured out that this is what I'm dealing with. Which could have made the process a lot more traumatic for me in the end. But because I had an early enough diagnosis, I was able to take a little bit more control of what was happening within the disease itself.

Dr. Correa:
And then when you started to see a specialist, how was the conversation about what this means? What's the diagnosis? What are the options?

Kellye Howard:
So the specialist was very clear. She was like, "Okay, here's what you're working with. Relapsing-remitting MS." But I did do a lot of research on my own and what I realized, even dealing with a specialist, though they have certain information, they're very techie, and coming from a doctor way of thinking about it. I needed to think about it from more of a lifestyle every day, what am I doing to help myself kind of perspective. And Montel Williams is probably, I look to him as like a true idol. As somebody that has persevered in this disease because he looks very healthy, he's still maintaining his mobility, his speech, he's able to do all the things that they claim are going to be taken from you eventually. And he's in his seventies.
And so when I look at that, I just was like, what is his process? And I saw that he was very adamant about health and wellness and diet. And so I just put the majority of my focus on that. I just actually, so I work at the university and I am on the fifth floor and I was going to take the elevator and I do this all the time. I look at the elevator and I'm like, I'm going to take it today. And then I'm like, or not. And I always take the stairs. I always take the stairs because I can take the stairs and that means a lot to me. And so I take the stairs. If it's under 12 flights, most places-

Dr. Correa:
12.

Kellye Howard:
I'll take the stairs.

Dr. Correa:
Okay.

Kellye Howard:
If it's under 12 flights, I will take the stairs most places because I can take the stairs. And that means a lot to me. So we have to believe in our own ability to combat these diseases too, I feel like. Not just take the diagnosis and say, "Okay, what's the pill? What do I do now?" A lot of this stuff is in our own hands. I really believe that.

Dr. Correa:
Are you also on any other treatments to help you manage the process and the inflammation that occurs with multiple sclerosis?

Kellye Howard:
So I have Kesimpta, I take the once a month injection. So that's doing whatever it's doing. Whatever it's doing, it's doing. It's been fine for me for like two years. And vitamin D obviously is a huge vitamin that people that's been diagnosed with MS should take according to research. And I meditate. I meditate every day. I've done extensive... I've done 10 day silent meditation retreats. I do extensive meditation. I journal, I do things like that. That's not necessarily helping with inflammation. But I do think it helps with, because stress is an inflammatory, so technically it is helping with inflammation.

Dr. Correa:
Yeah.

Kellye Howard:
So I'm going to eat my words on that. It is helping with inflammation. So by managing my stress outside of the vehicle, because that's the only place that I'm unable to do it, in a car, it's a little different when I'm driving. But when I manage my stress through meditation and mindfulness, I've noticed the difference. When I'm under a load of stress and I got a lot of things going on, I'm working, I have shows I'm producing, I'm traveling a lot and I'm slipping on my tools that I know work, I do start to feel more headaches and things. For instance, my father passed away at the end of December, and so I was an only child and there was a lot of stuff there with him. I was my dad's only child and there was a lot of stuff there, emotional stuff, and that's when the migraines started back up, was like two weeks after that around his funeral planning. And they've been here since and they just, I'm two days with no migraines. So I'm really happy about that.
But so I think the stresses of all of what was going on with dealing with his planning of the services and just dealing with family members that weren't that easy to deal with. And then also starting work and still doing shows and all of that and then not meditating as much and not working out as much, triggered the headaches. And then because I have the headaches, the migraines, the inflammation, then that makes me not work out because I'm afraid that I'm going to do something that's going to trigger tension. So it's like a snowball effect. It makes it worse in fact. So maintaining my tools, the meditation, the writing, and just some real mindfulness time, time to myself to just sit and be, is probably been the most helpful in everything, in multiple sclerosis, in sitting with my trauma that I've had to experience, working through the grief of being a mother that's lost two children, right? All of that is folded into the inflammation at large in my opinion.

Dr. Correa:
And for our listeners, we're going to talk some more about the treatments and management options with our medical expert in the discussion, but I wanted to really build and learn more from Kellye on these day-to-day things that you're doing to help and manage your symptoms. So what does an ideal day for Kellye look like?

Kellye Howard:
Ideal. Okay, so I mean I get up about 08:00-ish. If my bratty husband comes in there talking to me before that, it might be a little earlier, but for the most part I get up about 08:00-ish. And I try, the first thing I do is I take this big huge spoonful of honey, turmeric, pepper, and ginger. It's a mixture that I do. So I take a big huge spoonful of that. That's the first thing I put in my belly. And then I take a big large thing of water after that. I usually do anywhere from a 10 to 45 minute meditation, depending on how much time I got, what time I woke up. If I'm not dealing with any ailments like migraines or anything like that, then I'll most likely go to the gym, do about an hour and a half at the gym, some writing after that. If I'm teaching, if I'm doing the winter quarter, then I'll most likely have to be at work by 01:00. So I'm usually getting ready and trying to get here to the university.
And then after that I do a little bit of clerical work and admin stuff that we all have to do. Maybe some social media posting because we got to do that now as artists. So I'll do that or something. If I have a show, I have a show. And then in the evening I may do another meditation or sit if I have the time or space. I've been incorporating my husband, so we do meditations together now, which is really cool in the evening. And then maybe some yoga in the evening if I have a little bit of time.
When I go to bed though, something I do that I feel like is very beneficial is when I brush my teeth or when I'm flossing, I'll stand on one foot and then I will brush my teeth. I've been doing this for probably like 10 years. I brush my teeth with my non-dominant hand to encourage the part of my brain to light up and do things that wouldn't typically happen if I was brushing it with my dominant hand. So I do that. I'll stand on one foot while brushing my teeth and I'll switch, I'll do a couple hip rotations and I do that pretty much every night when it comes to standing on one leg because I think balance and mobility is super important.
And just by letting my body know, we're doing this every night, so get used to it. I think it's been very valuable to how my body responds to muscle spasms and weaknesses and stuff like that. Because I do still feel it a little bit. I have very little sensation in my lower extremities. That's one of my biggest things that I tend to deal with, that and the migraines. But because I do the StairMaster, I'll do like 45 minutes to an hour on the StairMaster when I go to the gym, I'm always about moving these legs, getting these legs on board with what's happening so they don't give up, letting them know I believe in them. I believe in you, legs.

Dr. Correa:
So you're giving your body and yourself belief each day, but you're challenging yourself a little bit, whether it's with balance, whether it's with using your non-dominant side, just in terms of even your focus and time with mindfulness and meditation. But then there's that whole thing called life. So you mentioned you have a daughter, you work, you're teaching, you travel sometimes for work.

Kellye Howard:
I would say early on in my journey with trying to figure out, oh my god, I'm so over the word journey. Everybody uses it. My journey, my journey. So early on in my trek, if you will, to health, I would let things knock me off my square or throw me. But I would say in the last probably five years, minimum, I prioritize my mental health over anything, I prioritize my peace because I am no good without that.
And so I prioritize at minimum five minutes, even if it's just before I get out the car. Just take a deep breath. Breathing, right? Our breath is right here for us. It is so present all the time. If it's not present, well that's a problem, right? Exactly. And so tapping into our breath, and that's something that we, I think a lot of us just forget. In fact, when we're going through like with the headaches, I'll get the migraines and the first thing I find myself noticing is that when it's the worst is when I'm holding my breath, I'm bracing for the impact of the pain. So I'm not breathing regularly. I'm not taking those deep belly breaths and really letting my nervous system calm down.
And so just being, I think my mindfulness practice of meditating and I started very small, so I like to say this with people because they be like, "Meditate? I can't do that. I can't sit for more than a minute." I couldn't either. When I first started, I would set my alarm for two minutes and I would sit for two minutes. I had a whole altar and everything for my little two minutes. And I would do two minutes for like 60 days. Then I bumped it up to five, then I bumped it up to 10 over time. And so now I'm at a place where I can sit for an hour, but I was never there. My mom used to joke because as a kid, if I sat down for more than two minutes, if she told me to be quiet, I would sleep. I was falling asleep. I'm not sitting and not talking.
So I think that prioritizing because I am no good for my husband or my children if I'm ill, if I'm not well. And that's why I do prioritize my physical and mental health before anything to include my career. My career is third to all of that. What can I do? How can I go and perform and be my best creative self if I'm hurting or if I'm struggling internally? For a long time, I believed that that's what fueled my art was my pain, right? This is what is creating this fascinating stuff. You have to be going through the depths and the hard shit. I don't know if you can curse on here, but you got to be doing it. But in all actuality, that's a mindset as well. And so really just reframing how we look at wellness, I think has been my saving grace and not believing that I should be in pain and that I have to be this way and that I have to go through this trauma in order to create great work. I've let that narrative go because it's not helpful or comfortable.

Dr. Correa:
Yeah, I mean it sounds like you see these as essential blocks or skills in yourself and being who you are and your health, and you might adjust on an ideal day to have the maximum amount that is best for you. But when it's a challenge, if you can at least get down to that one or five minutes, it at least helps you maintain it. And with some of your performances, you've been benefiting increasing MS awareness. You helped form a nonprofit called MSing Around. And tell us a little bit more about why you're taking MS on stage and how do you feel like you're trying to contribute your art to the work?

Kellye Howard:
So like I said in the beginning of the call, my three E's that I live by is to entertain, educate, and empower. Hasn't always been that way. Before, I just wanted to entertain. And I realized that just entertaining is a disservice to the greater population in my opinion. I think that I've lived through quite a few things as a young woman. I'm barely in my forties. I'll be 44 this year, and I've, I like to say lived the life of most women. I've lost children, I've been diagnosed with different things. I've had two cesareans, I've went through infidelity in my marriage, right? I've done all of these things that I feel like if we talk about it more, people will feel less alone. They'll feel less like, I'm going through this, I'm going through infidelity, I'm going through an autoimmune disease. And it's like, yeah you are, but guess what? I am too.
And so that just brings community even without having to necessarily say I'm creating community. I can just get up there and talk about it. And now I have a community of people who are also interested in me and interested in talking about their story as well, because they see how I'm using my platform to do so.

Dr. Correa:
Thank you so much Kellye, for helping us all feel a little less alone and to see each other and see others' experiences on stage and through your art and helping do your part to increase MS awareness.

Kellye Howard:
Yes, thank you. Thank you.

Dr. Correa:
Want to learn more about the conditions discussed in this episode and other factors that could impact your brain health? For the latest on causes, symptoms, diagnosis, treatment and management of more than 250 of some of the most common and rare neurologic conditions, please visit brainandlife.org/disorders.
I really appreciated Kellye's just not only laughter but frank approach to sharing with us her own story. And now we have returning one of our medical experts that many of you may have heard on our episode with Chef Mariana Orozco. And today we have joining us Dr. Lilyana Amezcua. She's a neurologist and multiple sclerosis specialist based out of Los Angeles at USC and the Keck School of Medicine. In addition to her care for the community, she's also dedicated her research to understanding the genetic and ethnic contributions in multiple sclerosis with an emphasis on defining the differences in disease expression and symptoms and progress in many different communities. And she's done extensive work to help identify the disparities that currently exist in multiple sclerosis care. Lilyana, thank you so much for coming back and joining us.

Dr. Amezcua:
Thank you so much, Daniel. It's wonderful to be here again.

Dr. Correa:
So I wanted, I think it really comes out of Kellye's story and I wanted to get to one of the initial questions being what is the importance of the timing of diagnosis for multiple sclerosis?

Dr. Amezcua:
Oh, it's everything. The timing is so important because we know that the earlier you start taking medication, which is going to be based on the diagnosis, you'll change that journey of MS. And so we've seen that there is diagnostic delays still now today, even though I first described them back about 10 years ago, where they seem to still occur among many populations where prevalence of MS has been known to be lower. And so there could be many factors including the community's knowledge of and health literacy of a condition such as MS. But also I think it's also the other issues include even just how we as physicians approach someone that is a young adult presenting in the ER or in your primary care setting or neurologist and thinking that this individual MS is not on your top differential because of X, Y, and Z knowledge in the past where we thought MS only affected a certain population, Northern European background, northern regions. And so that also as a bias contributes to the delay in diagnosis.

Dr. Correa:
Do you think there are even aspects about people's socioeconomic status, insurance status, other things that aren't specifically color, race, gender, that may even influence some of the biases that we might approach of cognitively when we're thinking of what's going on with a person and what needs to be done diagnostically?

Dr. Amezcua:
Absolutely. I mean the diagnosis of MS is complex, right? It requires a specialist. So having access to that specialist, not just a primary care requires a neurologist. A neurologist that's familiar or trained in multiple sclerosis is important for the diagnosis. The other one is the tools needed to diagnose MS, which is the accessibility of having an MRI and being able to do an MRI with a certain amount of strength, right? So at least a 1.5 Tesla, which in many countries these don't exist. So we just focus even on just the accessibility of MRIs across the US, you find that, yeah, there's about maybe five MRI stations per 1 million people versus you go to Africa let's say, and you're just barely having one MRI per 1 million people. We're not even talking about a hundred thousand, right? Neurologist expertise, in those low resource settings, your accessibility to a neurologist is also one per hundred thousand.
And there are areas unfortunately even within the United States where that access to neurologists and that access to MRI is not there. And so there's going to be delays because it takes three to four hours to get to them.

Dr. Correa:
Yeah. So not just even density and access within the actual community, but like you're saying, even travel access, which I imagine is a huge impact for many rural communities around the country regardless of a person's different background.

Dr. Amezcua:
That's right. And we did some data that's still being looked at with the National MS Society, but we presented this abstract last year showing that there are, apart from neurological deserts here in the United States, there are MS deserts. And that was based on looking at the, again, the density of neurologists but also overlapping the MS centers. And most MS centers are in urban settings, at big institutions. So really if you're having to travel 50 miles, 40 miles, over an hour to get to that MS institution, you're already having a barrier. And so that's important to take a look at to in the future trying to see how we can mitigate these issues that are impacting diagnosis and care for MS patients.

Dr. Correa:
And I want to come back to some more about these barriers and what is being done around the country. But before that, you were mentioning before how MS can be a complex diagnosis. One thing that always really strikes to me is the variety of symptoms that people can come with. Kellye described how now in recollection, not even necessarily in discussion with the different doctors, that she remembers episodes of shooting electric pain down her neck or her arm, an episode of problems with her arm function. There was a whole question for a period of time of her having bipolar or other mental health conditions that came on very rapidly and impacting her functional level. And now even whether or not that's directly related or just a comorbid situation with her MS. Tell me more about the variety of symptoms throughout the MS community and with the different types of MS.

Dr. Amezcua:
Yeah, so I mean you pretty much talked about various type of symptoms, that are sensory, that are probably capturing some of the mental health issues that we might see in MS patients. And the reality is that there are so many various symptoms that in many cases are not specific to MS. And so it's almost like you're sorting out which ones go on the bucket of where this may be stemming from a CNS process versus a systemic process, right?
In terms of applying what we call the McDonald 2017 at this moment, a diagnostic criteria, we are sitting in the middle of updating it as we're speaking, and basically is based on the presentation of specific syndromes. So the inflammation of the eye, which is the optic neuritis and that would be your visual symptoms, your partial myelitis, which is inflammation of the spinal cord, which may have sensory and motor or just sensory symptoms, right? These electrical shooting issues or brainstem syndromes where there's double vision or balance issues. And so those are more of the ones that you can easily say, okay, hey there is a demyelinating syndrome here and it's most likely this, as opposed to those symptoms of fatigue, of accessing the doctor many times to try to figure out why you're not feeling well. You can't find anything.
And we've come to understand that before MS or before that first episode that I just described, there's a period that is called the prodrome. And this prodrome is now being investigated to see if we can actually do an intervention. And the prodrome, a lot of the data has come from Canada, which has universal healthcare access, understanding that right before MS, two to five years prior, there's a very high utilization of services being used for diverse symptoms, mental health, just something that's not yet triggering that concept or triggering that primary care to think, oh, is this something neurological or is this something that I should send them, or that person should go and see a neurologist? Because again, this utilization, these symptoms are not specific to MS.
So it is very interesting that the majority of MS patients will always tell you there was some issues happening right before. And so we're trying to better understand that. But definitely we know that treating at the time of that first episode is important and even also the possibility of treatment is also there for those that only have MRI lesions suggestive of MS without any symptoms.

Dr. Correa:
So maybe if they're in this poorly defined or not yet defined prodrome but still have the other evidence on the MRI and some of the other tests, there may already be an option or some options in discussion for treatment as long as they're aware of the risks.

Dr. Amezcua:
Absolutely.

Dr. Correa:
Yeah, I mean I know you were just saying there's a lot we still are working on understanding there, but do you have a sense of how many people are shuttled around and maybe labeled as challenging or problematic patients who are in this period or prodrome of increased utilization of healthcare that maybe don't end up making it to diagnosis until much later at all?

Dr. Amezcua:
We don't. And I think that is a really great question because again, a lot of the data is retrospective. It's showing who ended up and who didn't and whether there's some that are missing. We don't know, but it could be... Certain things, we know certain conditions can increase the diagnostic delay. So for example, if you have a comorbidity such as a cardiovascular related comorbidity, hypertension, diabetes, which certain populations are at higher risk of having these comorbidities, then that diagnosis may take a little bit longer because right off the bat we are trying to exclude other possibilities. So those are comorbidities that are likely to affect the diagnosis.
And why I think they are an issue is because you know these comorbidities to affect disease severity. So what has happened between the symptom onset and the time of diagnosis can be as long as three to five years for certain populations, such as we found in Hispanic people. When you compare that to a typical maybe three to six month from symptom onset to diagnosis, right? And so why did it take that long and what are those barriers? Is it all just issues related to the individual, whether from perceptions, cultural barriers or is it also barriers at the system level that they're trying to access physician factors and how they have a huge impact in the diagnosis. And a diagnostic delay is considered a diagnostic error.

Dr. Correa:
So I mean, we're laying out and openly admitting as a profession, as medical professionals and as neurologists, we have one established textbook based understanding about the diagnosis. Of course our MS and neuroimmunology colleagues have a greater nuance in that, but there's a lot we're still trying to figure out, not only in over the general about the multiple sclerosis and other neuroimmunologic diseases, but particularly the impact in different communities. So I'd like to see, can we empower our community members, listeners, and patients when in the midst of all these things and symptoms, when should someone get evaluated and how should they prepare to try to avoid some of the pitfalls of these barriers?

Dr. Amezcua:
Well, I mean I think it starts off by things like this, right? Educating more about common conditions that are present at different ages when being aware that MS is an option is a possibility, then that individual can serve as, the patient can be their own advocate and being able to say, "Hey, I have numbness and tingling," which is not normal, right? And so many people may actually think, oh, it's normal, but if it's persistent, it's unlikely to not be normal. And so sensory balance issues, blurry vision, certainly I think the visual aspects probably brings those individuals much sooner to, there are certain symptoms that brings you to the physician much faster than others.
And then for our physicians, I think there needs to be a lot more engagement with primary care, because in many cases if somebody has HMO, they're dependent on that PCP to refer to a neurologist. And many occasions I've heard my patients that they had these symptoms, but they would not be given that referral. It took time to convince them to refer them. And so I think this is important. Of course the general neurology that's fine for them to know that they should have a low threshold to image, in my opinion and again. And from the primary care, I think it's that referral, that referral needs to happen much sooner for a young adult that's experiencing any of these type of symptoms or unclear reasons why they have bladder problems with fatigue and a constellation of symptoms that the thyroid or other systemic evaluations is not showing up.

Dr. Correa:
So I think one thing I've always tried to frame my mind around, so then that way I'm always inclusively thinking of a variety of symptoms when someone comes in is this idea of someone having a neurologic function, whether it's their eyes, their balance, their swallowing, the coordination or strength in their arms and legs or the sensation. And then I always think of and include in bowel and bladder control that is lost for days. And maybe then especially if problems like that have been moving around different parts of the body, is that a general way of where people can think of, oh, it's not that, it's almost like the acronyms and everything that are described around stroke, but that's thought of for a new symptom that comes on in seconds and minutes and the idea of can we make that go away? But if symptoms like that are happening and lasting days and then moving to a different part of the body at a different point in your life, is that really a way of thinking of when we really should be asking about these questions?

Dr. Amezcua:
I think so. I think you put it in a good way. Yeah.

Dr. Correa:
And do you think then, would you advocate that individuals, family members bring up the question of could this be an autoimmune disease like MS?

Dr. Amezcua:
Absolutely.

Dr. Correa:
There are many other ones, but-

Dr. Amezcua:
Exactly.

Dr. Correa:
... that may be the way that they can start and have that discussion with their primary care or with a neurologist that they're seeing or at least asking what would be the next step to say that it's not that?

Dr. Amezcua:
Yeah, I do think so. I mean, I think you put it correctly. And again, MS is a type, but yes, there is [inaudible 00:52:44] shared of these symptoms with other autoimmune conditions, right? And so I do think that the patient or the family member caregiver should bring it up as a possibility.

Dr. Correa:
So Kellye gave us her own good example of working through this herself. She brought up with her primary care that she looked up some of the combination of symptoms that she'd had, and she was pretty sure already she had multiple sclerosis. And the primary care doctor apparently responded, "No, you can't be. You're young and you're a runner." Which I think is an understandable reaction that we've seen other people have because they don't always understand that's actually often maybe the exact community that this could be impacting.

Dr. Amezcua:
That's right. That's right. And you also brought up something really interesting too is with the stroke community, there was a lot of education placed and acronyms, and I think that was very helpful. There was an acronym flowing around with the MS community, and this is from Dr. Jaime Imitola at University of Connecticut. And it's called VISIBLE or VISIBLE. So it's both in English and in Spanish. And it has the very specific important acronyms for certain symptoms of MS. And so maybe it's something like that that we start considering. It was published in neurology recently.

Dr. Correa:
Okay, yeah, that's a great one. And I think what we'll do is we'll include that acronym in the show notes for our listeners if they want to take a look and see how that's broken down. Many of you have heard us mention the acronym for stroke as BE FAST. And so either one of those, I think acronym wise, those tell us important symptoms of the neurologic system, the brain and spinal cord. And if any of those symptoms are occurring, you should be seen by a doctor. And if it's urgent and soon or recent, then you should be seen in the ER because it could be a stroke. And if not, and if something else is diagnosed, at least you're diagnosed at a time when some action can be taken.
So Lilyana, I wanted to come back and follow up just on a few topics that come up in our discussion with Kellye and are following some of our previous discussion. In the last interview, we discussed not only some of the typical symptoms with MS and how diagnosis can be delayed in different marginalized communities. Some of what we touched on here today. We also talked some about the barriers and timely issues in terms of getting effective MS care, challenges in communication around multiple sclerosis, and under-representation of different groups in clinical trials. Now given that we've mentioned that there is this implicit bias and limited understanding and awareness of MS also occurring in non-white populations and in different groups that may delay diagnosis, what strategies are in process to increase awareness and understanding in healthcare practitioners?

Dr. Amezcua:
Well, one thing that I do want to state is that when we're thinking about different populations and why has that occurred, it's because the issues behind what we think about as race and ethnicity, it's social factors really that are, it's a construct, right? And so, one of the strategies that we are thinking about, well one is obviously community engagement type of projects. And community engagement projects requires that you, it's not just a, I'm going to go out in the community and teach others, right? No. It's actually engaging with the leaders of certain communities, whether it's at a community center, at a church, at a recreation type of, wherever these communities convene and engaging with them and understanding what are some of the barriers in general to health and helping them empower their own communities by a collaborative effort.
And so with that, I think would help overall address the issues of health literacy, which is not just an issue to MS, but I think it's an issue overall for neurological conditions. It could help us understand the challenges with linguistics, obviously, the services that are needed for particular groups. And again, the end game is obviously to be able to navigate the healthcare system a little bit better and reach that equitable care. I mean, that's what we want for all of our communities. And some of these projects can take in the form of what we call dissemination and implementation science, right? Which is again, involves engaging with community leaders, right? And so those are some of the things to do.
The other things to consider is that we can already start looking at different factors, even as we see patients, even in our clinical decision making daily, when we're seeing a patient and a patient is troubled with certain insurance, we know that perhaps sometimes we cannot order certain specific things that we want, right? That in itself is already telling us there could be a barrier. It helps us inform our decision even in treatment. And so we need to be more aware of those issues, capturing those in medical records, right? There is, there's now a CPT code, I believe, for getting those social determinants of health, whether that individual has housing, that individual doesn't.
And all of these are really important because again, it's going to help us understand the effect of those factors in our ability whether to diagnose or care for that patient, right? But it can also help us later on create and be working with our leadership to design programs to provide the right type of assistance for individuals that are having these barriers. Whether this led to a diagnostic delay, whether this individual can have access to a specific disease modifying therapy that we are requesting for them, and then maybe it's building formularies for that specific drug, right? So those type of things, and I know it's very general and not specific, but because these are issues that are just not specific to MS, they cross over to so many other conditions. But that means that we have a better chance actually to designing interventions that probably can help a lot more for many other conditions in neurology.

Dr. Correa:
This is almost like the curb cuts in our communities, how they'll extend improvements in access and mobility for everyone in the community.

Dr. Amezcua:
Right. Because we can't do this alone. We need to engage with different individuals working in the same space.

Dr. Correa:
Yeah. And speaking of not doing it alone there are many reasons right now that both within our healthcare systems, academic centers, within the public health system, that even though there's a lot of effort to address a lot of the social factors that impact our health outcomes, there are barriers financially and just in even being able to move these programs forward. Are you aware of other community groups and advocacy organizations within MS or otherwise that are helping to create resources and address some of these barriers that might be more resilient to some of the challenges going on?

Dr. Amezcua:
Yeah, absolutely. I do feel that in the end, I think every organization that is in public health or in medicine, health equity is what we want. I mean, it's just, right now we're jumping into, it's like, yes, removing labels. We don't want labels eventually, right? We don't want to know that there's specific vulnerable populations. We want to make sure everybody's reaching their highest potential, living with a chronic condition or disease.
And so there is organizations that are very dedicated to health equity for MS National Society, MSAA, organizations that are not just for neurology, but are also helping in the MS space as other foundations such as The Bristol Myers Squibb Foundation. And so that foundation, for example, has been dedicated to global health issues for a long time and health equity, and they started looking at autoimmune conditions just recently, several years ago. So I think there is a lot of organizations out there that are wanting to foster these changes because of the global burden of these conditions. And so I think, yes, it's working with those and hopefully getting support from them to provide us to work together to prevent these issues that we're facing.

Dr. Correa:
So the MS Society could be a reliable source for information in terms of the health literacy issues-

Dr. Amezcua:
Absolutely.

Dr. Correa:
... about multiple sclerosis. And then for individuals who have a diagnosis or know someone with a diagnosis, and some of their care or challenges in both management or access to treatment, or even seeing a physician are either impacted by financial issues, transportation issues. Would the MS Society or other organizations, be a good resource for them to reach out and see if there is some social factor support that they could get?

Dr. Amezcua:
Absolutely. So for example, the Multiple Sclerosis Association of America, so the MSAA has specific programs, for example, they just brought back the ability to help out either with copay or paying for an MRI of the brain. So that is really one of the most successful programs they have, and just tells you that there's an overall need for that. They also have a series, I believe, of psychological support via tele, which is free. I think it's one or two sessions. So they have that. So that's the MSAA. The National Society obviously has a lot of health literacy and programs that they can do, but also they can connect you with other services that are local to that region because it's all over the US. So they have specific chapters that may help you. And one of the goals is also to connect individuals to MS centers. And that's up and coming once that neurological desert map will come up and be available for you to search, hey, where are all these centers located?

Dr. Correa:
And if you can maybe, hopefully, leave us with some inspiration or just an example of an individual that you have encountered along your way that maybe came with limited health literacy and a fatalistic impression about their progress of their condition, but what you've been able to see them do and achieve in their life.

Dr. Amezcua:
Absolutely. Well, I mean, I guess I could have numerous cases, but one case involves a young male that was basically turned away from multiple places because he had numerous amounts of symptoms, particularly pain all over his body. He's only, I think, around 21 or 22 years of age. And it was the symptoms that were eventually were being called somatic. And he did have from the beginning an abnormal MRI, but it was just not enough to account for MS, and there was no syndrome.
And so we eventually saw him and reviewed this, and of course the MRIs, we reviewed them as well and realized, no, this is likely MS. And soon enough we saw an MRI that changed and was even more convincing. But he had gone through this issue of pain for so many years and dismissal from a different neurologist and primary care dismissing his symptoms as being called mental, and to the point that when we saw him, it took us about a year, unfortunately, to convince him to go on treatment. But that is because we had to take care of all the years prior that he had undergone to mistrusting and having faith in our ability to treat.
And he is now on treatment. But again, it required a lot more attention from us, a lot more seeing him more often to educate him about the complexity of diagnosis and how it was just explaining what had happened in his journey and accepting that there was a possibility of errors, but also the complex nature of his symptoms that had led to this diagnostic delay and the importance of DMT, of course. And his mother was there along the way the whole time, which was important to always have her be present in those discussions, even though he's a young adult.
So again, every case is going to be different, but we shouldn't dismiss right away because at another center, they had dismissed him and they said, "Oh, he's so dramatic. We're not going to help out. Even if this is MS, we're just not going to take the time to try to convince him." And it's like, no, my job is here to try to convince him to go on treatment, and we're going to keep on doing that.

Dr. Correa:
Dr. Amezcua, thank you so much for joining us and for everything that you do to give the time to hear and to listen and support each person living better.

Dr. Amezcua:
Thank you so much, Daniel.

Dr. Correa:
Thank you again for joining us today on the Brain and Life Podcast. Follow and subscribe to this podcast so you don't miss our weekly episodes. You can also sign up to receive the Brain and Life magazine for free at brainandlife.org.

Dr. Peters:
Also, for each episode, you can find out how to connect with our team and our guests along with great resources in our show notes. We love it when we hear your ideas or questions. You can send these in an email to blpodcast@brainandlife.org and leave us a message at 612-928-6206.

Dr. Correa:
You can also find that information in our show notes, and you can follow Katy and me and the Brain and Life magazine on any of your preferred social media channels. We are your hosts, Dr. Daniel Correa, connecting with you from New York City and online @neurodrcorrea.

Dr. Peters:
And Dr. Katy Peters joining you from Durham, North Carolina and online @KatyPetersMDPhD

Dr. Correa:
Most importantly, thank you and all of our community members that trust us with their health and everyone living with neurologic conditions.

Dr. Peters:
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Advocating for a Multiple Sclerosis Diagnosis with Comedian Kellye Howard

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