"MS — At Least It's Not Cancer" (Marissa — Part 1)

RANDI 00:01

Welcome to Changed By Cancer. I'm your host, Dr. Randi Paynter. Today, we are sitting down with Marissa, a licensed pharmacist whose experience with chronic illness took an unexpected turn when an ongoing battle with progressive Multiple Sclerosis collided with an aggressive Stage III breast cancer diagnosis.

Marissa's story is one of the most unique and nuanced conversations we’ve had on this podcast. She walks us through what it really looks like to navigate years of insurance "step therapy," the physical reality of moving to full-time wheelchair reliance, and how hearing a Stage III cancer diagnosis somehow felt like a second chance at life.

The full video version of this episode, including our conversation in its entirety, is available on our YouTube channel and at ChangedByCancer.com. But whether you are watching or listening, Marissa’s perspective, honesty, and deep clinical understanding come through in every word. Let’s get into it.

Before we dive into today's story, a quick reminder: I am a cancer epidemiologist, but I am not your doctor or clinician. The conversations we have here are about personal experiences and systemic issues in healthcare; they are not medical advice. Please consult your own medical team for any health-related decisions.

Today I'm joined by Marissa, who is a licensed pharmacist, a mother, and someone who came into a cancer diagnosis after spending over a decade managing progressive Multiple Sclerosis. Marissa, welcome. Why don't we start near the beginning — how did your MS first present itself, and how did that lead to where we are today?

MARISSA:02:04

I was, let's see, about 42 years old. And we had — we were living — we are living in South Florida, Lake Worth. And I had, I have three daughters. So, at that time, my youngest was two, and, let's see. So two, seven and nine. I think that sounds about right for their spacing.

Things were going okay, but I, it seemed kind of out of the blue that I started developing a severe depression. And it was kind of inexplicable. Like, I mean, I've had maybe minor depression through my life, like cyclothymia – Sorry. Not cyclothymia. Dysthymia. I've been diagnosed with dysthymia through my life, but I've never had a major depression before. But at the time, I started to have these symptoms that you don't really think of with depression necessarily. I started to get kind of slowed down. I was sad and and crying, but also, really, losing words, losing language. That's not really a typical depression. And it was a hard time. I wouldn't wish it on my worst enemy, what I went through. And I have a lot of shame about that period in my life. It was maybe 4 or 5 months that I really was kind of out of commission, and yeah, I have regrets for missing out on being with my daughters like I should have. And even to this day, when I talk about having had a major depressive episode, there's this strange feeling that I feel like as long as I say, ‘But it was Ms’ that that makes it excusable. And that really shouldn't be the case anyway. But somehow it relieves this guilt that I have about having gone through that in the first place.

At the time, no one really had any idea that this could be anything neurological at all. But now, in retrospect, they say it's pretty typical for multiple sclerosis to have a prodromal period. And they say 25 to 50% of people with multiple sclerosis develop a major depressive episode at some point in their lives. Chemical changes are taking place in your brain that will lead to now what appears as multiple sclerosis using diagnostic tools and MRI's and the like. I do continue to feel a lot of guilt about having gone through that, guilt and shame and embarrassment, which it doesn't make sense. And somehow, chalking it up to the multiple sclerosis makes me feel less ashamed of it, which really shouldn't be. But that's how it is for me. So that would have been the earliest sign of multiple sclerosis — which you don't really hear about.

RANDI:06:49

What Marissa experienced in 2012 — a severe, sudden major depressive episode predating her physical neurological symptoms — is a phenomenon that medical research is only recently beginning to fully map.

In neuro-epidemiology, this is recognized as the MS prodrome. Studies show that between 25 and 50 percent of individuals with multiple sclerosis experience psychiatric morbidity, including major depressive episodes, in the years immediately leading up to a formal clinical diagnosis. Because these mood and cognitive changes often precede motor impairment, patients are frequently treated solely within a psychiatric framework while neuro-inflammatory demyelination quietly progresses in the background.

MARISSA:07:43

I mean, had I gotten an MRI when I was going through this depression, they might have seen a lot of activity. It's really possible. Because when I did eventually get an MRI, there were big lesions and a lot of lesions. Like one of the phrases I've heard is I was ‘Lit up like a Christmas tree.’ If you look at my MRI.

I started to have other funny symptoms, like, let's say now it's about 2014. I'm having urinary incontinence, and I'm chalking that up to, I had three kids, you know. Didn't think too much about it. I started — I remember one time going ice skating with my daughters and their daughters — my daughter's friends and their mom. And for the life of me, I could not balance on those ice skates. And it was so strange because I used to ice skate with no problems, but I just lost my ability to balance ice skating. Or another time I was in an elementary school cafeteria for one of my daughter's events. And those tables they have in the cafeteria are very low to the ground, and the chairs are very low. And I thought I was sitting down on the chair and totally missed it. Went straight down on the ground. My proprioception was like, off. Things like tripping unexpectedly. Then it started to get to a point where people were saying to me, ‘You're limping. Why are you limping?’ And I was not aware that I was limping, but people saw that I was limping with my right leg.

So, eventually, it's 2015 now. My father was diagnosed with fragile X tremor ataxia syndrome, which is a neurological condition that can happen to carriers of the fragile X premutation. My father developed a loss of his balance in walking, and it was misdiagnosed as Parkinson's initially. But after he got that diagnosis, I was fearful that maybe I was getting fragile x tremor ataxia myself. And I wanted to rule that out.

I had actually been to a neurologist a few months prior, and he gave me an MRI of my lower spine, thinking maybe I had a slipped disc. And based on the MRI of my lower spine, he told me I definitely didn't have fragile X. Sorry! He told me I definitely did not have multiple sclerosis, so that got me off track for a while. And I also have a joint hypermobility condition, and that might be connected to the fragile X gene. My father had that as well, so we thought maybe I'm having trouble walking because my ligaments are so lax and all these years of walking with these lax ligaments and flat feet — it was finally catching up with me. So we had all these ideas about what could have been happening to me, and we had the neurologist who told me I definitely didn't have multiple sclerosis. So that really made it hard to get a diagnosis.

When I went to a motion specialist to rule out fragile ataxia syndrome — fragile X tremor ataxia syndrome, he did a complete workup with an MRI, and he was taking his time getting back to me with the results. I was scheduled to see him in about a month after the MRI, and my symptoms were getting worse and worse, and I was... I got really, really anxious about what could be going on with me. And I finally broke down and called him in person, even though he made it pretty clear – ‘You need to wait till the appointment. I'll tell you what's going on.’ And after talking to the receptionist and insisting I got to talk to the doctor, he called me back and on the phone told me, ‘You have the brain of an 89 year old.’ I don't know what he meant by telling me that. Like, you do have brain shrinkage from multiple sclerosis, but that's, that's really not a good thing to tell a patient. When I heard that, I just was sobbing. Just crying. It didn't really make sense to me. But I think he had a problem with explaining things to patients. It was a real shock to hear that from him. So what he meant by that was I have multiple sclerosis, or I think he meant, your MRI looks like you have multiple sclerosis.

So I finally was seen by a nurse practitioner in 2016, and she was working under a neurologist who specialized in multiple sclerosis. So he was there for my first visit with the nurse practitioner, and I received that multiple sclerosis diagnosis. And one of the first things that he told me was people with multiple sclerosis have a seven year shorter life span on average. So that was another thing that just made me devastated. And I really didn't know what multiple sclerosis was. It's funny that I'm talking to you on a show about cancer because the first thing everyone says is, ‘But at least it's not cancer, right?’ That's the like, okay, it's multiple sclerosis, but it's not cancer. It's like, okay…

With the cancer I think there was a stronger sense of urgency. With the multiple sclerosis, it was an unknown. I knew it was bad, but I didn't feel like the longer I waited, the higher the chance that I would die, necessarily. Truth be told, the faster you treat multiple sclerosis, the less damage will occur to you. But it didn't feel like life or death.

RANDI:17:28

Diagnostic misdirection is a common thread among patients presenting with vague, early-stage auto-immune symptoms. Because MS symptoms can mimic spinal disc issues, hypermobility conditions, or stress-induced somatic responses, patients often spend years bouncing between specialists before receiving high-resolution MRI imaging of the central nervous system.

For Marissa, that eventual diagnosis brought both clarity and a new hurdle: insurance "step therapy" — a cost-containment protocol requiring patients to fail on older, less effective medications before approving advanced disease-modifying therapies.

MARISSA:18:18

When I was diagnosed in 2016, I had that limp. I started using a cane — which I hated the idea of using a cane. It was just like there was a sense of shame and embarrassment for having to use it, even though it was a good idea to keep me from tripping. But when you have multiple sclerosis, every time you use something else — some kind of mobility device — there's this big fear to accept it. Like, oh no, once I use a cane, I'll never, ever not need a cane. I went from a cane to using walking poles, which really wasn't a worse way to go. It actually was a good thing to do, because with the cane, you slant to one side. It's really bad for your posture. Walking poles — you can have good posture. It's a really good way to improve your mobility. And if you think about it, in nature animals have four legs. There aren’t three-legged animals. A cane doesn't really make sense, exactly. So I was using walking poles around 2018. And then, I started needing to use a walker. The walking poles weren't enough support. So I went ahead and started using a walker. And there's always this feeling of, I’m never going back. I don't want to use the walker, because once I use the walker, I'm never going to be able to not use it. But that's what I went through. Then I was trying to find, like, different ways to get around. I used this walker-wheelchair hybrid. I never did end up wanting to use a motorized scooter. I always wanted to use things that didn't use electricity. I always felt like I like the idea of being physically able to participate in my mobility, even if it's with my arms. I just like that connection to my physical movement and getting physical exercise for moving around. But I think it was around 2022 that I started to use a wheelchair full-time. It might have been a little earlier than that. I decided I needed to use it when I fell backwards holding my walker. My leg muscles just were too weak and I fell backwards and hit my head hard on the tile floor. So at that point, I'm using a wheelchair. And I went ahead and had a chair lift put on the stairs because it was getting hard to walk up and down my stairs and we weren't ready to sell our two-story house. So I know a lot of people with MS felt like, oh, I would never get that. I could never do that. Because once you get something like a device that takes you up the stairs, you know you're not going to go back. It's this weird kind of tug-of-war about what you need and what you don't. And you want to stay away from using things as much as you can.

At this point, though, I am, like, in a wheelchair full-time. I hadn't left the house during Covid, and after Covid, I was scared to leave the house because I was still immunosuppressed. So that lockdown for me just continued much, much longer than what the country experienced or what the world experienced. For me, it was a several year lockdown, not to mention the fact that at that point I was just too embarrassed to be seen in a wheelchair. I didn't want to go out. I didn't want to be seen. I refused to go to the store with my husband. I was very upset about the way my life was going, and I had a very negative outlook on life at that point. I felt like my life was just not worth living. I was very angry and very disappointed in the way things ended up for me.

I know that my nurse practitioner was just, ‘There's no urgency here. I'll just give you steroids. We’ll stave it off. You'll be fine.’ Because, after I was diagnosed with multiple sclerosis, the neurologist said, ‘You're going to be fine. We're going to put you on this medication, and it'll stop it.’ And, he wanted to put me on what was the strongest therapy at the time – Tysabri — which is natalizumab. It's one of those monoclonal antibodies. It's known as a DMT, or disease modifying therapy. And at the time, it was the strongest medication they had for multiple sclerosis. So he was going to put me on it right away and everything was going to be fine. And I was like, I'm going to get treatment. I'm going to do great. I'm going to be positive. But my insurance wouldn't pay for the drug. They refused. They were like, no, that's not a first-line therapy. We're not going to cover it. So I was getting really — now I'm feeling the urgency. That's when my nurse practitioner was like, this isn't really an emergency. I'll just give you more steroids and you'll be — you'll still be fine. She had me getting — I got some I.V. steroids to stave things off. Anyhow, yeah.

So, I was really desperate to get on the medication that the neurologist said I needed to be on. So for a while there we were looking into just buying it out of pocket. Yes, we were looking into that for — first of all, the nurse practitioner told me to lie to the insurance and tell them I didn't have enough income. Technically my husband was earning the salary, not me. So she's like, just tell them you're not making the kind of income that you need. Oh okay, now I have to explain this part of this story. For Tysabri, If your income is low enough then Biogen will pay for your Tysabri. They don't follow the rules of the market. It's the only — chemo is probably like this too — but it's the only example of medication that increases in price when a generic is created. That elevates, that raises the price. It has something to do with the negotiations with insurance companies. So it doesn't follow the rules of the market at all. It's so a drug manufacturer will get kickbacks for giving their medication to people who can't afford it. But you have to be in that income bracket.

So we were too wealthy to get the Tysabri from the drug manufacturer. And my insurance wouldn't cover it because they wanted me to try a less powerful medication first. At that time, that was the way a lot of people treated multiple sclerosis; they went with the weakest medication to start, and you worked your way up. That method is now being changed. Now the thought is, hit it hard while you can. Give them the hard stuff while their immune system isn't too messed up yet and stop the damage before it happens. That's the new way of treating MS. At that time, many insurances were on board with ‘go with the lowest necessary medication first.’ So yeah, my insurance would not start with Tysabri. And yeah, I did have my nurse practitioner tell me to tell the insurance company that I really wasn't making a lot of money. I really didn't have much of an income. That was my husband's income. But they didn't buy it, and it was so stressful to do that anyway. It was just, I felt awful. It really put me through a lot of stress at that point. So now we're like, we're just going to buy it out of pocket. We're just going to buy it. Go buy a bag of Tysabri, and buy it. That way we can just get it. I'm willing to pay out of pocket. But we were going to buy it, but then found out we didn't have anywhere that would infuse it in me because all the infusion centers are contracted out with the insurance companies. So you can buy a bag of medication, but you don't have anyone to put it in you. So, we learned that. We learned that the hard way, yeah. Oh, we didn't buy it after we realized we couldn't get it infused.

Insurance calls the shots. Insurance and the drug manufacturer, it's all — they call all the shots. That's how it is for multiple sclerosis. I mean, the pro to that is that they — these drug manufacturers — are really good about giving medication to patients. Patients in need — they'll do it because they get kickbacks. But, they also don't even, some of them don't even care what your income is. They just want patients. That helps with the research and that sort of thing. Because I've had drug manufacturers give me, pay for my medications since that time, that they're on board with giving their medication to patients. I guess there's other benefits for them to do that. Yeah, it's a really weird world. And it doesn't follow the rules of the market at all. And the doctors aren't the ones calling the shots.

So after I couldn't get on Tysabri, we went for a second opinion with my husband's uncle's neurologist, and he basically told me, ‘Oh, no big deal. All you have to do is fail two other DMTs that your insurance will cover. And after you fail those two, they have to put you on Tysabri.’ So that was the plan. I think it's a policy across the board. Some insurance, you only have to fail at one to get on the non-formulary; some insurance you have to fail at two. You know some people have got it right off the bat. But that was his recommendation to me. And my nurse practitioner agreed. Like what did she say? She said, ‘Let's give it the old college try. Let's try the medications that they will cover.’ So my first multiple sclerosis medication was… oh my gosh, blanking on the name. I should’ve written it down. Copaxone. Copaxone. That's one that you inject, and it's a weak efficacy compared to something like Tysabri. On the other hand, it's not as risky a medication to take, either. The real problem with Copaxone is that it can leave divots in your flesh, like if you inject it enough in the same spot, over time the fat starts to sort of hypertrophy and you get divots after injecting it long enough. But that's one of the issues, and it's not very effective, but some people do well with it. I was giving it the ‘old college try’ like my nurse practitioner said. And the second month I was using it, I got this grapefruit-sized induration in my thigh, and I was like, yes! So we went to the next level. The next one, Tecfidera, which is pill form and not really a big gun but stronger than Copaxone, like a more moderate type of medication. It's also a medication that treats psoriasis. It's fumaric acid. So it's used for more than treating multiple sclerosis. And I ended up taking Tecfidera for a few years, rather than… I never ended up going on Tysabri. I just went on Tecfidera as long as I could. That was like, I think three years or so.

I didn't fail on it. I don't think it helped. I mean, the MS that I had was progressive. When I was first diagnosed, they wrote in my paperwork that I had relapsing remitting multiple sclerosis, which is, most diagnoses are relapsing remitting. Most multiple sclerosis is relapsing remitting. That means that you're fine, and then you have what they call a relapse. And it hits you really hard and you're like, you can't get out of your bed. You’re like paralyzed or blinded — very, very powerful effects that you then heal from and hopefully go back to normal. That was not my experience at all. I always said I wouldn’t know a relapse if it bit me in the butt, because I didn't get what that meant, what it meant to experience one. I was a long slow burn from the start. So I did Tecfidera and I got to a point where my multiple sclerosis had progressed so much that my neurologist now — and now it's a new neurologist — after a year with my nurse practitioner and first neurologist, I got a new neurologist. And she's amazing. She's been my neurologist ever since. I'm really grateful to have her. So, she put me on, a medication called Mavenclad. That was 2020, around Covid. And this is actually going to connect to the second half of my story, if you can believe it. Because Mavenclad, or cladribine, is a chemotherapy that is used to treat hairy cell leukemia. And in a lower dose and in an oral form, they give it to multiple sclerosis patients. And it works by decreasing your lymphocytes, and that slows down the multiple sclerosis from attacking your nerves. So it's a very powerful medication. I developed lymphopenia on it. My lymphocytes never did get back to an adequate level. It was a helpful medication for me. Not drastically, and I did get lymphopenia, but it was a stronger medication than I'd been on. And I did think I noticed a little help from it, like a little bit of an alleviation from some of my symptoms.

It was very scary at that point. I was homebound. I never left the house. All of my friends that had multiple sclerosis, we were all of us just stuck at home. And I know a lot of us got worse during Covid because we were stuck at home without going to physical therapy. Definitely was particularly hard on us, and I definitely progressed to an extent, although the cladribine did seem to help. So I got through a two-year course of cladribine. Oh, I have an interesting story about cladribine and insurance. Okay. So the cladribine that I was prescribed is given as a two-year course. It's, that was the prescription that the doctor wrote. And there was no thought of you really don't need it after one year. You have to take it for two years for it to be effective at all. I had no trouble getting my insurance to approve me taking cladribine that first year. I know a lot of people did. And I felt very fortunate that I had no problems getting it covered. So I was getting ready to start my second year when my insurance refused to pay for it. They said, you really don't need a second year. And they wouldn't cover it. And that's another time when we started looking at what does it cost to buy it from another country? Out-of-pocket? I was on a mission to get it. I was not going to stop after one year. I was trying anything I could. The Federal Commission of Insurance in the state of Florida, talking to the insurance company, having physicians writing letters of necessity. I was trying everything I could to get this medication. And it was very stressful and disheartening to not be able to just get on the medication that my neurologist wanted me to take. And coincidentally, I was on Facebook and I got an ad from my insurance company on my page. And the ad was talking about how wonderful their insurance was and that, you know, we are so great for our patients. And I was so angry and like, how dare they send me this ad? That I just let loose. And I wrote on their ad, ‘You guys let me down when I needed you the most.’ Just a very strong comment. I didn't think anything about that it was helping me in any way. But less than 24 hours after I posted that, I got a call from the insurance company and they were like, willing to work with me so that I could get on my second year of cladribine. So I learned a really valuable lesson, that social media is a really powerful way to deal with insurance, if you ever have to. More than calling the Federal Commission. So that was an interesting experience, but I got myself my second year of cladribine and finished both courses. Finished the two years.

So I was diagnosed with estrogen receptor positive breast cancer, stage three, in July of 2022. I found out about it during a routine mammogram that I wasn't going to go to at that point. I went every year, on time regularly, never missed a mammogram. And this was the one time that I got a call a few weeks before, like, oh, we’re so sorry — we have to reschedule you. Something is going on in the office. And at that time I was so down about how much the MS I was dealing with had progressed, and I was just like, look, I don't even care. I'm not going to go. Doesn't matter to me. You know, too much trouble. I go every year. I'm always fine. And my husband was like, no, you're going to go. He really insisted on me getting that mammogram. The year before I had a normal mammogram. No sign of anything. And it was really a shock to learn that it had advanced so rapidly in a year. And had I not gotten that mammogram, I don't know that I'd be here today. I'm grateful to be here.

That was my state of mind — ‘til I did agree to go to my mammogram, even though I didn't feel like I wanted to, because who cares anyway? My life is crap. So what do I care about getting a mammogram? And when I got diagnosed with breast cancer, all of a sudden I realized I could die. And then I felt terrible about how little I thought of my life and realized that I actually had a wonderful life. And even though I was in a wheelchair, being alive meant I could see my family, I could read a book, I could go to a store, I could go outside — so many things that I never even thought about. I could not believe how much I didn't see. How much I didn't see that I had all along. And I didn't know if the breast cancer was stage three or stage four when I went to the oncologist the first time. And when she told me and my husband that I had cancer that was stage three, and that I would need to go on chemotherapy, and that I was going to lose all of my hair — I was like, yes! That's amazing! Because I knew it meant I had a chance. I was so excited and happy that I was eligible to go on chemo. I had this chance and I was just thrilled. And my oncologist was really confused because she's like, well, you're going to go on chemo and you're going to lose all your hair. I'm like, yeah, that's okay. I don't mind. It's okay. She had never seen that kind of a response. But for me, it was a second chance. To me it was the best news in the whole world. I was so grateful for that opportunity to fight the cancer. In the back of my mind, I did wonder about what effect the chemo would have on my multiple sclerosis. Because I was taking a chemotherapy for multiple sclerosis, and it was a powerful medication, and it did help to a degree. So in the back of my mind, I did think maybe this will be a good thing for the multiple sclerosis. And that's how I got started with my cancer journey. Or, I don't know, everyone calls it a journey. Like, I had a multiple sclerosis journey and a cancer journey, and I don't know what you call it, but I guess I had a cancer-and-multiple-sclerosis-together journey.

RANDI:52:03

It’s important to clarify the clinical nuance behind Marissa’s reaction on diagnosis day. For Stage III breast cancer, aggressive systemic chemotherapy and surgery are initiated with curative intent. While Marissa initially feared that a Stage IV diagnosis would mean no treatment options remained, modern oncology manages Stage IV metastatic breast cancer as a long-term chronic condition using targeted systemic therapies to maintain quality of life and extend survival.

Yet in that pivotal moment, hearing "Stage III" represented an active, immediate chance to fight — a lifeline she eagerly embraced after years of feeling sidelined by progressive disability.

RANDI:52:54

Marissa, thank you so much for being with us today and for sharing your story. You’ve brought such clinical clarity to what it means to navigate systemic insurance hurdles, progressive disability, and the psychological impact of a life-changing diagnosis.

And thank you to everyone for listening. You can find show notes, research citations, and resource links at ChangedByCancer.com. The best way that you can support this work is to subscribe on YouTube. It will also keep you current on new episodes, and you’ll certainly want to watch or listen to Part Two of Marissa’s story next week! I'll catch you on the next episode.