Kelsey
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After being diagnosed with MS in college, Kelsey has experienced migraines, fatigue, heat sensitivity, and urinary incontinence. Kelsey has participated in a few clinical trials. In one, she had to wear a smartwatch that attempted to validate whether the difference in activity measured by the smartwatch could be an indicator of a relapse. The purpose of this trial was to understand nuanced indications of relapses and develop more sensitive tools for detection. In this trial, Kelsey had to do a timed walk everyday with her husband who served as her control. She was tested on her fine motor skills by tracing outlines. Her doctor, who invited her to participate in the study, had access to the collected data. Kelsey also participated in a clinical trial that aimed to validate a measurement of cognitive ability which entailed two one-hour appointments where she did a “bunch of cognitive testing” with a research coordinator. She remembers getting an MRI for research though she does not remember if that was a separate study or tied to the smartwatch study.
Kelsey has never been invited to participate in an MS treatment trial. However, she would consider declining treatment trials as she is hesitant to put her disease course in the hands of a researcher. If she was offered an observational or validation trial, she would be happy to accommodate a demand on her time. If she was not feeling satisfied with her current treatment regimen, she would consider a clinical trial but at this current time, she is very happy and very stable on her MS medication. Her circumstances would have to change dramatically for her to consider going off her current treatment. The main motivation for Kelsey’s participation in clinical trials is a moral one; “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.” Kelsey believes that “science gets a lot of credit for the fact that I can live a mostly normal life now.” Kelsey has a unique experience in that she works somewhat closely with the researchers and therefore, finds it can get a little awkward when she goes into the clinic, but she does not feel any concern around sharing her data with the research team.
Kelsey describes how her life is different because of scientific advancements.
Kelsey describes how her life is different because of scientific advancements.
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.
Kelsey talks about not wanting to change from her current medication.
Kelsey talks about not wanting to change from her current medication.
Well, I think the only way I would consider it was if I did not feel satisfied with my current treatment regimen.
So, if I thought this risk of PML is too high, it makes nervous, I want to try something with a better safety profile, or if I started having relapses and was considering changing my MS medication, I think that would be the point at which I might be recruited to enroll in a clinical trial. But at this point, I'm very happy and very stable on my current MS medication. So, things would have to change pretty dramatically for me to consider going off of it.
Kelsey describes injecting her MS treatment.
Kelsey describes injecting her MS treatment.
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.
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.
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.
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.
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.
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.