Multiple Sclerosis

Kelsey

Age at interview: 31
Age at diagnosis: 21
Outline: Kelsey was diagnosed with MS during her college years. She experiences migraines, fatigue, heat sensitivity, and urinary incontinence but she is happy and stable on her current MS treatment. Kelsey works closely with MS research and is passionate about disability laws. She enjoys biking with her husband and raising funds for Bike MS.  
Background: Kelsey lives in a small city with her husband. Professionally, she works closely with MS research and health care. Kelsey identifies as a heterosexual White female. 

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During her senior year of college, Kelsey woke up with blurry vision in her left eye. After going to her campus health center and an ophthalmologist, Kelsey was tested for colorblindness, and they found optic neuritis in her left eye. Fortunately, Kelsey had previously established care with a neurologist to treat her chronic migraines which made it easier for her to receive an MRI. Though the MRI showed brain lesions, the neurologist did not think it was specific enough to diagnose her with MS. She was given no treatment at the time and her left eye remained blurry and partially color blind. Six months later, Kelsey’s new MRI revealed more active lesions and brain damage. Her neurologist diagnosed Kelsey with MS and referred her to an MS specialist. A full neurological exam and sensation testing showed that she was “pretty much normal” except for her optic nerve. Kelsey’s doctor assured her that the disease prognosis had improved in the last decade and her diagnosis is not fatal. Despite this assurance, Kelsey remembers feeling very anxious, very overwhelmed, very scared during the first year after her diagnosis. She remembers having a psychic, dark cloud around her knowing that at any time her immune system could attack her body in a way that “once the damage is done, it’s sort of done.” 

Kelsey began taking Rebif, an autoinjector subcutaneous injection three days a week which posed a huge inconvenience as she had to use a sharps container and travel with refrigerated storage. The medication and its side effects aggravated her migraines, fatigue, and heat sensitivity. While on Rebif, Kelsey had two relapses. A month after her relapse, Kelsey needed to find her own health insurance but with her pre-existing condition, she was rejected from almost every insurance company she applied for and ended up with an expensive insurance plan that did not meet her needs. Kelsey switched to a new medication, Tysabri, administered through a once-a-month infusion that has greatly improved her quality of life.  

Being in college when diagnosed, Kelsey felt isolated from her peers and removed from the college experience she was expecting. Fortunately, Kelsey had already established a relationship with a counselor who guided her through thinking about her needs, ways to articulate her needs to others, and determining reasonable asks of her friends. Accepting the future possibility of limited mobility led to her increased interest in learning disability law and thinking about wheelchair accessibility.  

Although she still struggles with migraines, for the last ten years, Kelsey’s MS management has been simple and stable. She gets an MRI every six months, tests for the JC virus antibody, and receives Tysabri infusions. Kelsey also experienced urinary incontinence much later in relation to her initial symptoms. As a young woman, going to a urology clinic challenged her identity as a young and virile person but now, Kelsey takes a daily medication that alleviates this symptom. Kelsey believes that being a person with MS, her lived experience with the disease is impossible to totally separate from being someone with migraines. Today, Kelsey is involved in the MS community through fundraising and her work with an MS affiliated neurologist. Kelsey’s closest friends and husband are pretty good at knowing when she is getting faded and can tell when heat sensitivity or fatigue is impacting her. She feels that she has come to a very good place of understanding and calm about her MS which she tries to convey to her treatment team.  

 

Kelsey stopped trying to change her diet when she saw that it made no difference.

Kelsey stopped trying to change her diet when she saw that it made no difference.

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Other aspects of getting diagnosed, there is some evidence that diet is linked to MS disease progression. So, at the time, my doctor was like, "You might want to consider trying this diet. There is some evidence it could help." So, I tried to do that. It was a pain in the butt. I didn't really enjoy it. It was basically trying to remove as much saturated fat as possible, so everything good. And as, you know, a 21-year-old whose friends are all just like, I don't know, French fries and beer, that was a shift. Yeah, so I sort of did that. And I tried to stick to it. But it was just really annoying. It felt like a lot of work. It felt like there wasn't really strong enough evidence to do it. I didn't see a strong impact on my weight or feeling healthy. So, I think after six months, I was like, I'm going to give myself a pass on the diet stuff and just try to live a normal life. 

 

Kelsey’s quality of life has improved after she switched from injections to infusions.

Kelsey’s quality of life has improved after she switched from injections to infusions.

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So, I switched to a new medication, Tysabri®, which is what I am currently on, which is amazing. Quality of life wise, totally different. It's a once-a-month infusion. So, it's a little scarier in that you have to get an IV or whatever. But I didn't have to give myself shots three times a week, which was great because that got very old.

 

Kelsey describes injecting her MS treatment.

Kelsey describes injecting her MS treatment.

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The long-term treatment, which was actually very annoying for my [CHUCKLES] quality of life. I did not find it fun. They came in this really just fancy autoinjector, which now that I've given myself a shot with an actual syringe, I realize it just makes a very violent injection process because it's all spring loaded. So, it's sort of nice in that you just press a button, and then it injects you. But it's overengineered to make sure the liquid goes inside of you, so it's just a lot of force. So, I had bruises all over my belly where I did my injections and on my upper hip and back here. It was just, you know, subcutaneous injection is the protocol. And so, they basically take the fatty areas with fewest nerve endings. But it's still big, ugly bruises, having to ice myself for half an hour before every injection three times a week.  

INTERVIEWER: Oh, my gosh.  

--so a huge inconvenience. And you know, no one else my age had to figure out a sharps container and to travel with refrigerated storage when you're anywhere for more than, like, two days at a time because I have to do this three days a week. So that was a big adjustment.  

 

Kelsey figured out that her injections correlated with painful migraines.

Kelsey figured out that her injections correlated with painful migraines.

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And I was on that medication for, I think, maybe six months. And it sucked. The main side effects I had were these flu-like symptoms that clearly fluctuated with the injections. So, I was on a three-day-a-week schedule. So, my longest stretch of no medication was always when I felt the best. And then after my injection I would usually be fatigued. And I think the biggest issue was my migraines would be terrible because I was having this inflammatory, flu-like thing. But I am a person with migraines. And so, any sort of disruption to my baseline basically just makes my brain go crazy, and I'm in a lot of pain. And so, at the time I was working, like, 75% effort at this consulting firm. And I just kept calling in sick because I was in so much pain from the migraines. It took me, I think, a couple of months to do the math and figure out it actually was really strongly correlated with when I was doing my injections. So, at that point was when I figured out, like, “OK, I think there's a problem with this medication, and it's not the one for me. I need to look into something else.”

 

Kelsey’s MS treatment made her chronic migraines worse.

Kelsey’s MS treatment made her chronic migraines worse.

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And I think the biggest issue was my migraines would be terrible because I was having this inflammatory, flu-like thing. But I am a person with migraines. And so, any sort of disruption to my baseline basically just makes my brain go crazy, and I'm in a lot of pain. 

And so, at the time I was working, like, 75% effort at this consulting firm. And I just kept calling in sick because I was in so much pain from the migraines. It took me, I think, a couple of months to do the math and figure out it actually was really strongly correlated with when I was doing my injections. So, at that point was when I figured out, like, OK, I think there's a problem with this medication, and it's not the one for me. I need to look into something else.

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I think a few months after I started on Tysabri, I had sort of a crisis with my migraines where I just had one that never ended. And some of the best abortifacient-- so in the moment, treating a migraine to make it go away-- medications are IV. And so, I was in and out of the infusion center a lot trying to treat my migraines but also keep up with my MS medication. And then at that point I got a migraine that was so bad that I had to actually quit my job and move home with my parents--   

INTERVIEWER: Wow.   

--because I couldn't work. Yeah, so that wasn't an MS thing. But I still had MS while this was going on. 

 

Kelsey's interactions with her providers improved over time.

Kelsey's interactions with her providers improved over time.

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I think I would-- during my best times, I would try to ask questions about prognosis. In my more stressful times, I mostly just was like-- you know how you can sort of passively make your way through a doctor's appointment where you just answer the questions, they tell you what they're going to tell you, and that's the end? I feel like I more defaulted to that as opposed to the more proactive of, I have a list of things I need you to tell me before I leave this room. But I think I would sometimes be like, what should I expect, what should I be worried about, what should I be looking for, trying to figure out what was a concerning symptom that meant something was very wrong versus, like I said, just being a human in a body. Things don't always work well. That's sort of inherent to being in a meat sack. But how to know whether my numb foot is because I sat weird or, oh, no, my immune system is attacking my brain was a difficult thing to get my mind around and get comfortable with.

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Now, I have a lot of faith in my medical team. And I feel like I have an understanding of what sort of things I should be reporting to them if they come up.

 

Kelsey manages heat intolerance by air conditioning and limiting daytime activity in hotter months.

Kelsey manages heat intolerance by air conditioning and limiting daytime activity in hotter months.

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I think it really only comes up when heat is an issue. So, living in the super balmy [LOCATION] is perfect for me. But I remember-- even when I think about going on vacation and stuff, if I go somewhere that's going to be really hot, I need to have access to air conditioning. That's a non-negotiable. And I mean, even as a 31-year-old, that's a little bit-- I still sometimes feel like a little bit of a diva because, you know, most people my age are pretty outdoorsy and robust. Luckily, I live in a place where that doesn't matter as much. But I remember when I was living in Baltimore, like summer days, if I want to go on a bike ride with my husband, that's probably not going to happen during the daytime. I would get really out of it really quickly.  

 

Kelsey recalls advice about joining a support group for young people.

Kelsey recalls advice about joining a support group for young people.

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And I think, I mean, I can't remember when, but at some point in the process, I had my MS doctor-- once I finally got the MS diagnosis, he was like, "You should seek out a peer support group. This could be useful to you." And he very clearly said, "The medications available for MS now are profoundly different than ones that were available a decade or two decades ago. So, I want to make sure you go to a support group of young people who recently got diagnosed because if you go to a just standard MS support group, you're going to get a very pessimistic idea of what your life is going to look like." And he very clearly was like, "If you see people who have had MS for 20 years, they are all going to be in wheelchairs or at least have some limited mobility. And their disease is going to have a huge impact on their quality of life. And this is not necessarily your future. And I don't want you to assume that it will be your future.

 

Kelsey attributes her ability to live with MS to scientific advances

Kelsey attributes her ability to live with MS to scientific advances

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I mean, for me, seeing the difference of what my life has been like on Tysabri, and I mean even on Rebif, compared to the other people, the older people in my support group, and the sort of traditional sense of what MS means, it's incredibly clear that science is completely-- like, science gets a lot of credit for the fact that I can live a mostly normal life now. I think if I had gotten diagnosed 10 years ago, my life would be very different because the drugs available would have been very different. And so, it's really clear to me that I have a moral obligation to support any sort of science in MS because I'm benefiting from that work already.

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