Multiple Sclerosis

Karen

Age at interview: 50
Age at diagnosis: 37
Outline: Karen was officially diagnosed with MS eleven years after her initial symptoms. She experiences chronic fatigue and headaches, as well as some issues with incontinence. Her Christian faith is her number one priority in her life followed by her marriage and children.
Background: Karen lives with her husband and four children, ranging from in age from teens to twenties, in a suburb on the East Coast. She works part-time as a substitute teacher and patient ambassador through a drug company. She identifies as a White heterosexual female.

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When Karen was 26 years old, her whole arm went numb while she was teaching. She went to her primary care doctor who did a series of tests including an MRI and a spinal tap and told her that her symptoms were “MS-like” but that she had no definitive lesions on the MRI. Karen was the most scared she had ever been going through this initial testing because nothing like this had ever happened to her before. Over the next 10 years, Karen had four children and believes her MS symptoms were in remission during her pregnancies. After her last child was born, she started to have tingling in her hands and went back to her primary care provider who did another MRI. This time, Karen’s “brain lit up like a Christmas tree” and she was diagnosed with relapse-remitting MS, eleven years after her first symptoms.

After her diagnosis, Karen started on three times a week injections, but due to liver function decline she had to go on a different everyday injection which she continued for several years until she started having injection site reactions. The injections were hard for Karen as she had a severe needle phobia at first and “felt totally blindsided” by needing to take an injectable medication. After the shots, Karen started on a new oral medication which she took for several years. In 2013, Karen was diagnosed with breast cancer and stopped her MS medication to undergo cancer treatment, choosing a “more holistic approach with (her) MS” during that time. After she “beat cancer, yay” she started back on the oral medication which she had been on until last year. Due to a change in insurance, Karen switched to another medication for which she became a patient speaker through the pharmaceutical company.

Karen experiences bowel issues, urinary issues, sporadic vertigo, chronic fatigue, and debilitating headaches. The fatigue is particularly challenging and leaves Karen choosing “whether I’m going to like work through it or whether, [um] you know, it’s just debilitative fatigue.” Not being able to participate in activities with her children on a high fatigue day is particularly challenging for Karen as a parent living with MS. Karen appreciates her “amazing, supportive, Christian, dedicated husband” who has been understanding throughout her MS journey.” She is also grateful she can work part-time as a substitute teacher as she believes the stress and fatigue of full-time teaching would contribute to more flare-ups of her symptoms. Karen “gives (her)self a lot of grace” adapting to however she feels each day: “at the end of the day, if, you know, I’ve been able to run a couple errands or maybe sub or maybe be able to cook dinner and sit down for dinner with my family, [um] that’s what gives me the most joy.”

Karen has a great support system of family and friends, one of whom also has MS. Though she doesn’t socialize as must as she used to, the social circle she now has is “very, very understanding and very gracious.” Karen has learned to be “very intentional about what we commit to”, saying no to many social events in order to conserve energy.

Karen is an advocate for others with MS and other health issues, using her “spiritual gift...of help.” Karen participates in a support group in order “to help other people,” specifically offering reassurance to others who are newly diagnosed. Through her advocacy work, Karen feels she is “making lemonade out of lemons because most people that are diagnosed with a chronic, no-cure disease—[um] a lot of people, I should say, kind of do the woe-is-me thing. And that just isn’t who I am. (Advocacy work) has given me a chance to just help other people meet a ton of people, be social.” Karen wakes up grateful and excited for each day and believes MS has made her a “better person...when I say God’s plan is bigger than my own, that’s why it’s tattooed on my arm because it is the truth for me.” Karen thinks it “would be really, really nice to know that practitioners really understand the value and meaning of a care partner. You know whether that would be encouraging a patient bringing a spouse with them to the appointment or, you know, offering handouts for things that a care partner can do that would be helpful for the patient.”

 

Karen experiences bad outbreaks of vertigo.

Karen experiences bad outbreaks of vertigo.

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So that is very sporadic too. The worst times that I’ve had it, I’ve been bedridden because just even being upright, I’m so nauseated, I can’t function.

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But [um] if you’ve never had vertigo, it is not fun. It feels like you’ve gotten off—you’ve just stepped off of a roller coaster that maybe had a bunch of loops in it. You just, every time you get it, it’s just awful. 

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When I have a vertigo outbreak, I mean, I can’t, I can hardly function. I can hardly get out of bed. So, you know, definitely it’s hard to deal with some of the symptoms.

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And I’ve had it worse sometimes than others. But there have been times where it has bedridden me for a couple days. And I’m allergic to the medication they give you to help with some of the symptoms. I can’t take it. So that has been [LAUGHING] a little bit difficult too when I do have a bout of bad vertigo.

 

Karen is grateful for the development of new MS medications.

Karen is grateful for the development of new MS medications.

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So, I go to these monthly dinners in our area, where a new drug is introduced or where a doctor will be doing a talk on a specific drug treatment. And as I mentioned, I’ve been with four different drug treatments. So, I know that no treatment is probably going to last me my lifetime, so I’m always open to learning. And I, again, am so grateful. When I was diagnosed in 2008, as I said, there were only a few drug treatments, and they were all injectables. There are like 22 different treatments right now. That’s amazing, really. In 13 years, that’s amazing. And it’s due to advocacy work of people who have gone before me, people who have done clinical trials before me. So, in my eyes, this is huge. I mean, I recently met someone in the last year who did a clinical trial back in like ‘98 on a drug that was my first drug that I was on in 2008.

INTERVIEWER: Wow.

And I looked at her and said, thank you, thank you. You know that drug didn’t work for me long term, but because she was in a clinical trial, that drug came out, and that was the first drug I tried. I mean, to me, that was like monumental.

 

Karen experienced severe side effects from her treatment.

Karen experienced severe side effects from her treatment.

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I was very anxiety ridden during the first four months of the every-other-day injectable. One of the symptoms is you feel like you have the flu the day after. So, every other day for about, I guess it was five months total, I had a two-, four-, six-, and nine-year-old at home, only one was in school, and every other day, I was on the couch with flu-like symptoms. It was hard. It was harder than my year of breast cancer treatment, I will tell you that. It was hard. After the four months, when my liver function failed, I was really grateful, actually, to be able to go off that medication. Because that was one of those medications where I had to balance whether the side effects were worse than the MS treatment. Because the side effects were pretty debilitating with me home with the three young children.

 

Karen was excited to be taken off her MS medications.

Karen was excited to be taken off her MS medications.

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INTERVIEWER: So, then the first two MS medications that you had to stop for the liver [um] numbers and the injection reactions, what was that like for you to have to stop those? How did that process kind of play out?

So, I have to say I was actually really excited …

INTERVIEWER: Okay. Uh-huh.

When the first medication failed because I just was so sick every other day with that every-other-day injection. I think, eventually, they say your body gets used to that. My body, over the four to six months I was on that, it just never got past that initial new like every-other-day symptom. And it just was hard. As I said that October, through like March, I want to say October through March, that was harder than my year of breast cancer treatment. I mean, it was hard. And that was just the side effect of the medication I was on. I mean, like, so when you think about that, it’s kind of a hard pill to swallow like, you know, that the medication you’re on is making your life harder than the disease you’re on the medication for. And, I mean, that’s why when you see these commercials for medications. and the list of side effects is like three pages long you know, you wonder, you know, it’s kind of this balancing act, like is it worth it? I was getting to the point where I didn’t feel like it was worth it. So, when the doctor said, your liver functions are bad, you’ve got to go off, I was like, okay.

 

Karen deprioritized her MS while being treated for breast cancer.

Karen deprioritized her MS while being treated for breast cancer.

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INTERVIEWER: Yeah. So, the year that you were sort of dealing with breast cancer, anything else you’d like to say about how your MS, sort of what that was like to have cancer and also be trying to manage your MS?  

Yeah. So, in all honesty, MS kind of took a back seat for that year. I mean, if I was symptomatic with my MS, I don’t remember, or I ignored it. So, the year that I went through breast cancer, my kids at that point would have been 6, 8, 10, 13. So my two younger ones, you know, they were in like pre-K, first grade. You know, they were still pretty young. So, I was pretty sick. I had the surgery. I had 6 rounds of chemotherapy, and then I had 45 straight days of radiation. So, it was January through like the end of September, and then I went right on a estrogen-blocking medication for 5 years, which put me in medicinal menopause at age 40, which was rather crappy. But in answer to your question, the MS, all I can say is it kind of just took a back seat during the year 2013. And then, as I said, probably October, November of that year, then I started back up on my MS medication, just kind of picked up where I left off and just continued from there. 

 

Karen’s MS medication choices are limited due to her history of breast cancer.

Karen’s MS medication choices are limited due to her history of breast cancer.

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And I’m able to pinpoint, like for instance, there’s a couple MS medications right now that are not good if you have a history of breast cancer. So, like I know those are like off the table for me. There’s, you know, a couple of them have different, just different things with them that I know I personally don’t want to do an injectable again. I’ve already done two. There is a newer monthly injectable, which I have considered. But in the small print, again, if you are a cancer survivor, if there’s a link to that, that won’t be an option. So, I can kind of, you know, pick and choose that way. 

 

Karen feels comfortable talking with her neurologist.

Karen feels comfortable talking with her neurologist.

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And I have come to find out that you can’t really go by someone else’s opinion. You can listen and validate the experience they had, but it doesn’t mean you’re going to have that same experience. The doctor that I see now, I know other friends who did not like him at all. As I said, I found out he had four teenagers, and we hit it off immediately. I like him. I feel like he trusts me and my instincts and my research, [um] and I trust him. And I just feel it was a very casual relationship. And [um] he’s not real, real over the top, and I don’t, not to mean that he’s not thorough, but he’s just somewhat laid back in my care. And I’m okay with that because I’m very proactive for myself. I like the fact that he listens to me and that he values the information I bring to the table regarding my own care. So, I’m very happy with who I’m with now. I’ve had varied experiences. I would say overall, they’ve all been pretty positive. But I think, you know, I have made it a priority to really establish relationships with all of my caretakers.

 

Karen is proactive about her treatment and building her relationship with her doctor.

Karen is proactive about her treatment and building her relationship with her doctor.

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I have a great relationship with my neurologist from—I’m very proactive, as I mentioned. And my desire is always to not just be a number on their calendar. So, I really make it a point to get to know my doctors personally, as much as you can, you know, at an every-six-month visit. But my current neurologist also has four teenagers, so we lot of times talk more about our families than we do about my health issues. And I know he knows who I am when I come in. I’m not just a number. He always asks me about my kids and things, and so he listens to me. And when I came to him and said that some things were changing with the drug that I was on, regarding my insurance and the coverage and the idea that it was going from brand name to generic, that there was going to be some issues. I had already researched what I felt was going to be my next fit for my next drug. And ahead of my meeting, we have an online portal. I was able to say, “hey, listen, this is what’s happening with this medication that I’m aware of. This is what’s happening with my insurance. These are the drugs I’ve researched. I know this one isn’t good because I’ve had breast cancer. I know this one was good in the past.” And when I went to my appointment, he said, “you know, I’ve researched, and everything you said looked good. And we were able to get started on the new medication immediately. 

 

Karen wishes providers were more aware of treatment costs and insurance. 

Karen wishes providers were more aware of treatment costs and insurance. 

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I think the one thing that healthcare providers, you know, aren’t aware of is, you know, the internal conflict that patients have in devoting costs in insurance. And I think something that might be helpful, particularly with MS patients, is, you know, prior to discussing medications, is maybe, you know, to have somebody at the office sit down with that patient. And maybe make some phone calls to your insurance company and maybe talk about some of the medications and the prices and kind of learn the protocol of how the step therapy works.

 

Karen is optimistic about a future cure for MS. 

Karen is optimistic about a future cure for MS. 

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I know in my heart that there will be a cure for MS. I would like to ask an MS expert how confident they are that there would be a cure, you know, in the next five to ten years. Yeah, that’s it. I want to know if, you know, I want to know how optimistic MS researchers are because I am. And I have to think that they have to be optimistic as well, just knowing that in 13 years, there are quadruple, you know, the amount of medications that are available now. So, there is major progress. So, yeah, what is it, what’s the missing piece, and how soon are they going to find it?

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