Episode 119 Part One - Dr. Summer: A Journey Through MS and NMO

I recently enjoyed speaking with the incredible Dr. Summer about her remarkable story. I’ve been following her journey on TikTok, and I was eager to dive into her experiences with neuromyelitis optica (NMO), a condition that was initially misdiagnosed as multiple sclerosis (MS). Summer's resilience and determination to overcome her challenges are truly inspiring.

In the first part of a two-part interview, Summer shared her journey from being misdiagnosed with MS to receiving the correct diagnosis of NMO. She explained that NMO is often confused with MS due to their similarities, but it has distinct characteristics that can lead to more severe symptoms. Summer described her initial experiences with various treatments, including Gilenya and Tysabri, and how they didn’t work for her condition. It was only after multiple attacks that her doctors reconsidered her diagnosis and adjusted her treatment plan.

During our conversation, we discussed Dr. Summer's journey through misdiagnosis and the impact of her condition on her medical career, the emotional challenges of living with a chronic illness and the fear of unpredictability, advances in treatment options for NMO and the hope they bring to patients, and the power of resilience and determination in overcoming health challenges.

DISCLAIMER
The information in this podcast is for informational purposes only and is not intended as a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified healthcare providers with any questions you may have regarding a medical condition or treatment.

Links and resources:

Sign up for the 10 Weeks to Disrupt MS Program

Follow Dr. Summer on TikTok
Visit Summer Banzhaf, DO at Fairfield Medical Center

If you're interested in having Kathy speak at your event, learn more here
Find out more about the DMAT Fitness Training program

You can find Kathy Chester at:
msdisrupted@gmail.com
disruptfitnessgym@gmail.com
moveitorloseit109@gmail.com 

Connect with @msdisrupted on Instagram, Facebook, TikTok

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Transcript

Kathy Chester: Hello, I'm your host, Kathy Chester, and welcome to the Move It or Lose It podcast, a podcast about all things that move the mind, body, and soul. The Move It or Lose It podcast is for information, awareness, and inspirational purposes only. I am not a doctor and I don't even play one on TV. So please consult with your doctor before making any medical decisions. The views expressed by advertisers, guests, or contributors are their opinions and not necessarily the views of the Move It or Lose It podcast. 

 Hello, welcome to another edition of Move It or Lose It. And today I'm excited to have Summer. And she is an actor, but we're not going to call her that today, just Summer. So this has been someone that I've been really excited to have on. I've been watching her on TikTok and some other things, and you've got quite a story. So welcome to Move It or Lose It. Thank you. Nice to be here. You are a beast as to what you have done and what you've taken on and not quit. The stuff that you've really worked through to become who you are now is just, I just kept reading it and I was like, and then what? And I kept telling my husband that she did this and then wait and listen to this and just phenomenal. So let's talk a little bit about who Summer is. You were diagnosed with not multiple sclerosis, but you were diagnosed with a disease called NMO. Talk to our listeners. What is NMO?
 Dr. Summer: Actually, I was initially misdiagnosed as MS in 2017. They changed it to NMO later. And that's common, super common. At the very, very similar diseases, NMO is called neuromyelitis optica. And it at one time was considered a super aggressive form of multiple sclerosis. It was actually part of the multiple sclerosis bundle. It tends to cause longer spinal cord lesions and optic nerve lesions first before brain lesions. And when I say longer, so MS gets spinal cord lesions as well. NMO is three vertebrae in length or longer, whereas MS tends to be shorter. So it tends to be one that builds up disability quickly. It's thought to not have a progressive phase, although there's some questions about that, but that's way off in the distance in studies.
 Kathy Chester: when they thought you had MS, what did they do with you in the beginning?
 Dr. Summer: So initially I was started on Gilenya and then I had another attack and then they switched me to Tysabri and then I had another attack. So my three attacks were within 18 months. So pretty compressed timeline. They all involved transverse myelitis which is a pretty severe spinal cord attack. And the last one also had optic neuritis with it that I lost a bunch of vision. But anyway, it was at that last one that they're like, hmm, maybe we have something wrong here and decided to re-look at it. And when they re-looked at it, they're like, oh no, we could give NMO instead of MS. The problem is many of the treatments for MS actually make NMO worse. and selenium Tysabri are two of those that tend to do that.
 Kathy Chester: Wow, yeah. It's so interesting because I read that and I was like, I was on Tysabri for years and I loved it and it was taking off it.
 Dr. Summer: It's a great medicine for most people. It's such a great medicine. I would never tell someone, hey, don't take this just because I had a bad experience with it. What's bad for me may be perfect for someone else.
 Kathy Chester: And then if I understand it, you are also not allowed to take things for like rheumatoid as well, right? I have rheumatoid as well. So two diseases that aren't friends, rheumatoid and MS. I'm like, these don't go together. I know it's like the rheumatoid medicine that my body would do well on can't because of the MS. So I know when I read that with you, I was like, oh, dang, I understand that. I have SOS as well.
 Dr. Summer: So SOS is a disease Another autoimmune disease I've picked up along the way.
 Kathy Chester: Yeah, so- Also had EDS as a kid. So talk to us about that. So a lot of, I have a client that has that, but a lot of people do not know what EDS is.
 Dr. Summer: Okay, so EDS is a connective tissue disease that most people have the hypermobility form. So that just hypermobile joints, right? Right. And when I say just, it's only in relationship to other EDS hypermobile joints is awful. Lots of subluxations, dislocations, a lot of ortho type stuff. There's a lot of pain with it. EDS, natural progression, at least as far as the hypermobility part of it. It's bad, you get a lot of dislocations. And then in your older years, things start becoming more spastic. And so you lose some of the hypermobility, but you have the spasticity and pain from it.
 Kathy Chester: So are you dealing with a lot of the spasticity right now or are you still in the hyper?
 Dr. Summer: Kind of both when it comes to EDS. I have my shoulders and wrists are still very hyper mobile, but a lot of my spasticity that I've developed is actually more due to my NMO.
 Kathy Chester: Okay.
 Dr. Summer: So I was six weeks from finishing internal medicine residency when I had my first attack. I had what is known in residency as a golden weekend. And that means a weekend where you don't actually have to work. You actually have two days in a row off. So, you know, I was super happy about that. Went home, was spending it with my kids, you know, enjoying the weekend. I noticed on, I believe it was Saturday morning, that my left hip felt like I was sitting in a window and the sunlight was shining on it. You know, where it gets that warm, but not warm, but it wouldn't go away. And it just got worse and worse and worse. And then by Monday morning, I could not move my right leg. My left side felt like it was on fire, but I'm also a resident that had didactics Monday morning. So I got in my car, drove to work, sat through four hours of lectures. But anyway, so I went to my attending and I said, Hey, Dr. Nickel, that's her name, I need to talk to you. And she's like, okay, let's go in the other room. And so I'm dragging my right leg, because my left leg, I could still move, but my right leg, I couldn't. So I'm dragging it in there and she looks at me, she goes, so what's wrong? And then she proceeded to do what attendings do to residents, which ask you a ton of questions to make you come up with the answer and you come up with the next step. So it got to the point that it's like, so what do you think? and I'm like, well, I'm pretty sure, but I don't want to say it out loud. It's the, well, I think it's probably multiple sclerosis. Let's go get the MRIs. So she ordered the MRIs for me and then got me in touch with Neuro. They started me on IV steroids for five, let me tell you, for five days straight. So I would go get my IV steroids. and then go around on patients. I worked the entire way through my first attack. Did physical therapy. And for transverse myelitis, I will say this, it was a mild case of transverse myelitis compared to some people.
 Kathy Chester: I mean, I know it's very painful.
 Dr. Summer: It can be very, very painful and very, very severe. Some people can't move anything, right? And this was affecting just my lower extremities, my upper extremities were fine.
 Kathy Chester: So- So you were in a wheelchair for that?
 Dr. Summer: Well, I was dragging myself. Okay. Yeah. It wasn't the smartest or best thing to do. We've all done that stuff. Yeah, but my goal was to finish residency on time. I had six weeks left. I already had my contract signed to be an attending hospitalist. I was like, I just got to finish these six weeks. Yeah.
 Kathy Chester: So that's what I did. Good for you. You are like a force to be reckoned with. You were definitely going to finish. You weren't going to let anything stop you. And you didn't. So you finished.
 Dr. Summer: Well, I was actually doing pretty well. That was when I was started in Chilinia. And I had two months off between when I finished residency and when I started my first attending job. And so I took those two months to do a lot of physical therapy focused on being as healthy as I could for that job. Cause it was a hospital's job, which is seven days on seven days off, 12 hour days. And I was going to be driving an hour each way for work, you know? So I was like, okay, I'm gonna make sure I can handle this. So I was doing all the things I needed to do to do that the best I could. And, oh, it would have been Three months into my first, that job, I had my second attack. That one I ended up in the hospital for. It was again, another transverse myelitis. It had a little bit higher up level than before. So now it involved like my chest down. Still my upper extremities were pretty good, but you know, they initially did these steroids and they did not work. So they did Plex. So that was the first time I had Plex. DidPlex, that actually seemed to work really well. It was super painful the first time because when the IR put the line in, they left a lot of gauze between the line and my chest wall, and that was painful. It'd wait three days till they could change the bandage. Once they did and they popped that gauze out, that pain went away. DidPlex, that was, 10 days of the hospital for the Plex treatment to be every other day, physical therapy on the days off. I don't know if you, have you ever had Plex? No. Okay. And I don't want it. Yeah. It made my blood pressure drop really low, that it goes super slow. It was pretty miserable, but it worked. That's the important thing, it worked, right?
 Kathy Chester: I mean, that's the thing. It's like, none of us want these things. You know, I do chemo because my MS kept, or in the early days. I did not want that. I was like, absolutely not. But it absolutely halted my MS, you know? Yep, exactly.
 Dr. Summer: So then that was when I was started on Tysabri. And I actually did fairly well for almost a year because I had those first attacks. My first attack, which was six weeks before I finished residency, would have been in May, May of 2017. Second one in October. And then I didn't have another one until July of the next year. Okay. Wow. Yeah. You know, I, that was the whole, just about a year and a half span, a little under where I went from those three major attacks that got me rediagnosed as NMO and where I'm at now. Okay. Wow.
 Kathy Chester: We are so excited about our new program. It is not about disrupting the status quo. It is about empowering you to lead a life filled with strength, resilience, and joy. Join us on this exciting journey because disruption begins with you. Ready to make a positive change? Let's disrupt MS together. I can't wait to see you. So obviously you were you were diagnosed 39 almost 40, right? So Like, I want you to really talk about some of your biggest concerns and your fears.
 Dr. Summer: When I was first diagnosed and diagnosed as MS initially, I was concerned about, like, do we know the unpredictability of this disease? And I was concerned about what that unpredictability would bring. What, over time, that would do. Would I be able to continue this career that I worked so hard for and absolutely loved I don't necessarily enjoy all the things about the medical, the health care system, but there's a lot we can talk about on that. Right.
 Kathy Chester: Exactly. You know, but I will. Maybe the next time I have you on, we'll talk about that.
 Dr. Summer: Oh, it's a beast. It's a beast. But, you know, would I be able to continue that? And then also, would I be able to continue doing the things for my kids that.
 Kathy Chester: Right.
 Dr. Summer: They want, I want. Those are important things for me, you know. That was my concern, and then over that first year and a half, I kind of settled into the MS diagnosis, and I had really good recovery from those first two attacks, for the most part. I, to this day, still have burning on the left side of my body. My right side is weak. Those lingered from the first one, and they just kind of built up over time, but I was like, okay, I can get through this, you know? But then when they switched my diagnosis to NMO, because I will be honest, NMO is taught as a line in med school. You do a neurology rotation, you might hear about it a little bit more. It's not taught much of. And at that time, the time that they switched me from MS to NMO, it was, each of the month before or right at that same month, was the first NMO FDA approved medication there had ever been. Prior to that, there were no FDA approved medications. It's not what I'm on. Prior to that, they used a combination of other meds and rituximab a lot. And now there's like four medications that are approved for NMO, but they're all for seropositive and seronegative, which is even a more rare subgroup. Wow. If you do the math, there's probably around 400 to 1,000 of us in the United States that are seronegative NMO.
 Kathy Chester: Wow. You're just an overachiever, obviously.
 Dr. Summer: Obviously, right? But so when they switched my diagnosis with that because, and this has changed a lot, but pre-good treatment for NMO, the prognosis was five years from diagnosis and you would likely no longer be alive.
 Kathy Chester: Yikes. And you were diagnosed with MS then. And I remember, you know, back in the nineties, cause I had it now 20 something years. And that's kind of what it was. You were told back then with MS, it was like you had a VHS tape and it was like some older woman's like on this very, very slow walk. And it was like a wheelchair in this many years, death in this many years. And it was like, great. I threw that crap out and I was like, no. So I get it. It was like, these are the worst like outcomes. Like, no, thank you.
 Dr. Summer: And I will say with that, with the advancements in treatments for NMO, including for seronegative, it's not quite that way anymore. It's highly variable, just like MS is. It tends to be with less recovery between attacks. So the disability that you get is typically there, but it's no longer. In five years, you're not gonna be around. I was switched to NMO in 2019. That's five years ago now. I was diagnosed initially in 2017. I've already passed that five years, right? So I'm no longer scared of that. I was scared of it initially, but I'm not now. Yeah. I'm still concerned with what is my biggest concern now. So they put me on Ocrevus and my neuro had to jump through a lot of hoops in order to get me on Ocrevus at the time. It's actually now used quite a bit in NMO.
 Kathy Chester: That's what I was going to ask you. Are they using that more and more with NMO?
 Dr. Summer: Yeah. Right. Because it's the humanized version essentially of rituximab. and it has way less infusion reactions. I'm someone that tends to have a lot.
 Kathy Chester: And it's supposed to hit, right? It's not, it's not, no, you don't need something to hit your teeth out. That's why that's high savory. Those ones are a no, no go.
 Dr. Summer: Right. So they did give me permission to get on the Ocrevus. It took a little bit of time. I was one of the first people in the United States that actual Ocrevus rather than Rituximab was used on for NMO, but I do have infusion reactions every single time. So they go slow and give me a ton of extra pre-meds and re-dose me partway through. But the concern when she was getting me the treatment for the NMO was this medication is for seropositive. You won't let her have that because she's seronegative. Rituxan is what's known to be okay for NMO. but she has such bad infusion reactions, we will probably kill her with the infusion. So she did get me on to Ocrevus and I've been on it since. And I've had little tiny things occur, but nothing that required change in medication and nothing that was really additive. So that last attack I had in 2019 was my last major attack. And it is the one that I have left. I've lived in that area of disability since. I haven't had any additional stuff. It's just been that.
 Kathy Chester: Okay, very good. So with that, like no infections with the Ocrevus or anything like that?
 Dr. Summer: I get infections, I get you guys, I get skin infections, we treat them. I know, me too.
 Kathy Chester: I'm always like, well, I cut myself, well, that's gonna be like a big deal. So every time I do anything, it's like, okay, well, there we go with that. But it just comes with it, you just know, I have a women's support group and I talk about that a lot with our newly diagnosed and they're terrified of Ocrevus and they're like, what is it going to do? And I'm like, I think a lot of us do very well on it. And sometimes a switch from Tysabri to Ocrevus is difficult, but I think it's a wonderful drug that men do very well on.
 Dr. Summer: I'm so happy I've gone. It was now officially full five years since being on Ocrevus and no additional major relapses, like I said, little things, but not enough to change anything.
 Kathy Chester: Right. Like the fact that you can take it and our primary and our secondary people with MS can take that where there was nothing for them to take. And now they've got it. It's amazing. And it's like, it's amazing. It's so awesome. And there's another one coming. It was like, all we were treating was relapsing remitting. the rest of them were just like, well, good luck. And then why do we think the depression is number one? I don't know. Jeez. Right. We are going to do part two about how you became a primary care physician and how that changed. So you'll have to look forward to tomorrow. I will see you soon. Bye guys. Well, thank you so much for joining us today on Move It or Lose It Podcast, where you can, again, find us wherever you like your podcasts, whether it's Apple, Spotify, and join us on that. And we can't wait to see you again. We're gonna have a lot of exciting guests and working together. And as always, you'll hear us say at the end of every podcast, we are stronger together. So let's do it. Let's become stronger together. Have a great day.