Jennifer
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In early 2020, Jennifer began to experience numbness in her toes. Prior to her diagnosis, Jennifer experienced similar symptoms over the years, which her doctors first suggested “might just be a quirk of being Jennifer”. In April of 2020, Jennifer experienced numbness in her toes that spread to her ankles. Over the next couple of weeks, the numbness spread to her knees and Jennifer began to experience blurry vision, stiffness in her legs, and lightheadedness. Jennifer rationalized her symptoms as being the result of long workdays during COVID-19 stay-at-home orders. When the numbness reached her torso, Jennifer decided to go to her nurse practitioner who recommended a brain and spinal cord MRI. The doctor informed Jennifer that she had brain lesions and diagnosed her with relapsing-remitting Multiple sclerosis (MS) in 2020. She started immunosuppressant medication immediately.
For Jennifer, the stress of the diagnosis led to more symptoms, primarily unsteadiness that resulted in being unable to walk more than 20 feet without assistance. Jennifer’s doctor prescribed her some IV steroids, which reduced the symptoms. Jennifer sought information about MS on the internet from “authoritative medical websites” in order to understand what was happening to her body, treatment options, and what to expect. Jennifer’s research helped her tell people about her MS and challenge incorrect perceptions of MS. Social media, especially Instagram, allowed Jennifer to find people like her living with MS and made her “feel heard and supported.” Seeing herself represented among other young women and people her age living their lives with MS brought Jennifer a sense of comfort.
Jennifer finds MS to be lonely in that “nobody really has your symptoms, has your progression. It's really just you managing it the best you can and trying to find common ground with people in the best ways that we can, and just support each other through our own unique journeys.” Jennifer is very open with her MS story today. In addition to being deeply involved in fundraising and advocacy, she shares her story on social media and with her local MS chapter. In addition to her social media activism and advocacy, Jennifer has also started a Walk MS team for her corporation which received a lot of support from her co-workers.
Jennifer is now taking Ocrevus, a twice a year infusion, which gives Jennifer the “freedom to live 363 days a year not having a daily reminder” of MS. Now, Jennifer has permanent toe numbness, spasticity, tightness, and tingling in her legs especially if she is active, and a little black dot in her vision that appears when she is hot. Most of Jennifer’s symptoms are intermittent, except for the toe numbness that serves as “a permanent reminder” of her MS. She considers herself “very lucky and grateful to really be able to do everything” she was able to do before. Jennifer knew that MS would change her life, but she was not ready for how it changed her life. She has developed empathy and kindness, learned to say no, and how to listen to her body on this 13-month ongoing journey of self-learning and resiliency.
Clinical Trials Experience:
Jennifer became involved in clinical trials after looking on the MS website for updates on new medications for MS. Thinking that clinical trials were all medicine-related, Jennifer was pleasantly surprised that there were clinical trials for lifestyle changes. Jennifer felt empowered to get involved in these studies where she could “help science” while making changes that fit her lifestyle.
Jennifer’s first clinical trial experience was a study for newly diagnosed MS patients and aimed to help them cope with the mental uncertainty. For eight weeks, a social worker called Jennifer once a week to walk her though a cognitive behavior program “talking about the uncertainties, what parts of the uncertainty of MS were hard” for her and coping mechanisms. Jennifer learned that she dealt with uncertainty by exerting control. She spent “exorbitant amounts of time Googling and learning everything about MS” and the study taught her how to balance learning about MS and channeling her actions into other coping methods.
Being newly diagnosed, Jennifer identified with the uncertainty of MS and struggled with what it would mean for her. Jennifer decided to participate in the study because she felt she could “stick” to it and saw the potential benefits for her. Jennifer attributes much of her ability to process her MS to the study. As a younger person, she saw MS as a question mark for the rest of her life. The study helped Jennifer “learn to adapt” and rethink how she thought about her future. Now, she accepts the uncertainty, but she does not let it “cripple” her.
Jennifer has also participated in a study that examined whether intermittent fasting had an impact on the gut and how she felt. In this study, she was given an accelerometer that monitored her steps, when she was going up and down hills, and on stairs. Based on those results, she was given a projected calorie intake and asked to choose an eight-hour span in which she would eat. In addition to a body scan, the research team drew Jennifer’s blood twice. Because the eating window did not fit into her lifestyle or provide health benefits, Jennifer found it difficult to eat within the time span, but she remained honest with the research team about her difficulties and “failings” until study completion.
Jennifer is currently participating in a telehealth and yoga study that tests the benefits of stretching and yoga, as well as the benefits of telehealth. In this study, the research team allows participants to do yoga over telehealth and sends Jennifer a spreadsheet with the names of yoga moves for her to do twice a week that are tailored for people living with MS. For Jennifer, this study not only helped her spasticity, but made her feel that she was “truly helping” her community by showing the “power of telehealth for people that might not have the mobility and the easy transportation to get to facilities.”
Jennifer has had great experiences with the consent process as many of the research teams “go the extra mile” to let her know “all of the efforts and safeguards they’re going through to make sure” that her data are used in the way that they are supposed to be used and kept in the right hands. The consent process makes Jennifer “feel comfortable with the organization in the study” and tells her that they care about her and not just the data that she provides. Jennifer sees her participation in clinical trials as her way of paying it forward. Jennifer feels proud to be in clinical trials where she can help herself as well as future generations of people that have MS. She appreciates the people that participated in clinical trials before her, and she appreciates the people who will continue to do it after her.
Jennifer thought her symptoms might “just be a quirk of being [me].”
Jennifer thought her symptoms might “just be a quirk of being [me].”
I think, I was still chalking up to, well, you're staring at your computer for nine hours a day. So maybe your vision's blurry. Maybe you're lightheaded because you have been in an apartment for six weeks straight. And I'm sure your legs are unhappy with you because you're averaging about 400 steps a day. So, I just chalked it up to not a big deal.
Jennifer did a lot of research before deciding which disease modifying therapy to take.
Jennifer did a lot of research before deciding which disease modifying therapy to take.
INTERVIEWER: When he recommended that you go on Ocrevus®, what factors did you take into consideration about making that decision to start that medication?
I know, for me, like I said before, I'd looked a lot on social media, and it definitely seemed to be that, again, the people that looked like they were around my age, living my lifestyles, really were liking the IV treatments. There [are] multiple infusion treatments out there, but that really seemed to be kind of the trendier treatment. And then I obviously did my research to back that up too, that Ocrevus® is one of the newest ones. It has all these fantastic results, and honestly, reading into the infusion treatments is a lot of what made me start feeling better about my diagnosis when I officially was doing all my research. So, when he recommended it, I was really excited to try it. Like I said too, I think that twice a year is fantastic for me. I like the freedom of only having to think about it twice a year, and it's only for a couple hours, and it doesn't hurt. You're just sitting in a chair. I would come, I would bring snacks, I'd bring a tablet, I’d watch Netflix, drink some bubblies, and then go home. So, it really, for me, it fits, which is why I also want it to work. And I think it's hard when you don't know if it's going to work or not because it fits my lifestyle so well, but that's just part of MS.
Jennifer reflects on the frustrating process of getting her infusions approved.
Jennifer reflects on the frustrating process of getting her infusions approved.
I know, for me, it was a lot of just getting the approval for my Ocrevus©. I mean, it is $60,000 twice a year. So, I would tell my doctors' staff too, they'd say they'd get a pre-approval, I wouldn't hear back from them. They'd say, "It's because you didn't fill out a form," and I can point out where I did fill out the form. Then they would say, "Oh, we'll call them." I’d follow up three days later. They would say, "Oh, we couldn't get them. Do you have a different phone number?" So, I would have to call insurance. It's just that consistent back and forth. It's maddening. Every time you get diagnosed with MS, they should all give us personal assistants to help us go through the logistics of insurance and the administrative part of health care. But like I said, it's worth it at the end to get your treatments. We should all find a support group where we have happy hours on Friday for surviving the admin stuff.
After her primary care provider thought she might have MS, Jennifer found a neurologist.
After her primary care provider thought she might have MS, Jennifer found a neurologist.
INTERVIEWER: What was it like to find your neurologist and to find a care provider?
My journey was actually pretty easy. Like I said, I went to my nurse practitioner, general doctor, and she suggested that it may be-- and we did the MRIs. And then, when the results came back, I knew the health system I wanted to go to, it’s where I had already had some of my other specialists. So, I really just called them and said I wanted to speak to a neurologist, and they asked why. And I said MS. They sent me to the MS clinic, and then I lucked out, and my doctor is actually the head of the MS clinic, which is a delightful, happy accident. But my journey was actually pretty easy. I know not everyone's that lucky.
Jennifer uses social media to connect with other people with MS.
Jennifer uses social media to connect with other people with MS.
There are so many different groups and platforms, and it really is finding the group and the platform that fit you. There's so many MS groups out there, don't stop at the first one. Make sure to find one that has the level that you're looking for. I know, for me, personally, I wanted one-- there's one on Ocrevus, which is my specific treatment right before I started. It was nice to speak to people that have been on it, asking questions about what does living immune compromised look like? What actually is an infusion? Questions that I didn't know the answer to. So that was helpful. I've also found several Facebook groups that are really on the technology, people that are really looking to the new and upcoming treatments. So, it really helps me stay in tune with what's next. I know the MS Society has a Facebook group that's there for a lot of the people asking questions. They have their navigator team that's there to support and provide answers. So, it's really just thinking about what you want out of the social media connection, and there's a group for you, and just finding the right one that fits your needs.
Jennifer explains how counseling was critical when she was first diagnosed.
Jennifer explains how counseling was critical when she was first diagnosed.
INTERVIEWER: When you were first diagnosed, were you put in contact with any kind of psychologist, or psychiatrist, or mental health counselor?
No, and I think everyone should be. Actually, for me, there was a clinical trial in the [INSTITUTION] for newly diagnosed MS patients, and it was actually to do counseling to help us deal with the unknowing of MS. And I attribute so much of my "able to process all this" to that study.
Jennifer feels she is the same person she was before her MS diagnosis.
Jennifer feels she is the same person she was before her MS diagnosis.
I don't really know if it impacts my life that much. I feel like I think about it all the time. I try not to, but it's very hard. I feel like it's definitely become a piece of me. I work very hard to make sure that MS doesn't define me, but it's as much a piece of me as being a wife and a daughter. But I try not to let it really impact my life. I think I'm still the same person I was before. It's funny. Now that I know I've had MS for six years-- I think I got it in grad school-- so it's nice to know that, when I look at everything I've done in my career, I did all of that with MS, like everything, like meeting my husband, getting married. We didn't know it, but I did all of that with MS, and it's just helpful to at least think about it that way, that I was able to accomplish all these things with MS. So hopefully, I can continue on that trajectory as well and not letting it stop me.
Jennifer shares that MS means getting to define your own life.
Jennifer shares that MS means getting to define your own life.
I think my message for all newly diagnosed people is life doesn't end the day you get diagnosed. It feels like it does, and it felt like it did for a while, but you learn how to live your life with MS. Whatever that looks like, whatever MS brings your way, you have one life to live. These are the cards we're dealt, and there's a lot of life that you can live with it. So just to kind of keep your head up. You have a support group for the bad days, and then for the good days, we're also here to celebrate with you. But MS doesn't define you. You get to define your own life.
Jennifer wishes doctors would communicate collaboratively with patients.
Jennifer wishes doctors would communicate collaboratively with patients.
I would hope that doctors could learn to be more collaborative. So truly listening to the patients' wants, and needs, and lifestyles, and what they're willing to do. If you have a patient, asking them, "Hey, are you willing to update some diet and some physical stuff? Here's some recommendation," instead of relying on the patient to know to ask the doctor, "Is there anything dietary or physically that I can be doing?" I know, for me, it's very frustrating when the doctor's like, "Yeah, just increase your physical activity." And I'm like, "OK, well, what does that mean, and I don’t know what that means.” It’s hard. You have to find it on your own. So, I wish there was a way to complete the circle, instead of just saying, "Hey, you should do more exercise”, “Hey, you should do more exercise and if you don't know what that exercise is, let me recommend you to an OT or a PT that can help you on a fitness plan." Because I feel like a lot of people get stuck in that. Or, "Hey, you should really clean up your diet. If you don't know how to do that, let me recommend you to a dietician that can help work you through this." There's just a lot going on in your head, and expecting you to put together a functional diet and fitness plan, if you've never done that before, on top of dealing with MS, you're setting people up for failure.