Multiple Sclerosis

Dina

Age at interview: 47
Age at diagnosis: 26
Outline: After experiencing a pins and needles sensation that spread from her feet to her hips and disappeared after a few weeks of rest, Dina first received a misdiagnosis of transverse myelitis.  When grief re-activated the pins and needles sensation, Dina finally received her MS diagnosis. Dina continues to periodically experience the pins and needles sensation, as along with fatigue. Dina does not allow MS to interfere with her life. Dina’s advice to others with MS is to keep going: whatever the plan was prior to diagnosis, don’t change the trajectory. MS is now just a new part of it.  
Background: Dina is a self-described domestic engineer and professional volunteer with a background in member services and nonprofit management. She is heavily involved in volunteering for women’s rights organizations and school PTOs. Dina keeps herself centered through ai chi, deep breathing, and meditation. She lives in an urban area with her husband and two kids. Dina identifies as a heterosexual White female.  

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Two years before diagnosis, Dina began to experience early symptoms of MS which included transverse myelitis and a pins and needles sensation that began in her feet and worked its way up to her hips. A brain, cervical, and thoracic MRI found no evidence of illness and her doctor suggested rest. After a couple of weeks, Dina’s symptoms disappeared. The loss of her father and a beloved professor whom she had known for years triggered a new symptom: pins and needles sensations in her hand. At the recommendation of her doctor, Dina received a lumbar puncture that confirmed her MS diagnosis. 

Dina felt distressed and overwhelmed hearing her diagnosis because of the sheer volume of information she received regarding the many possible treatments and the permanency of her diagnosis. She felt very lucky to have an exceptional neurologist with a calming and understanding disposition to make the process of diagnosis and starting treatment much easier. Following diagnosis, Dina was concerned about how her physical capabilities and cognitive abilities would change, and her ability to have and raise children. Dina takes Avonex to treat her MS, although she went off her medication when she was tried to conceive, was pregnant, or nursing. She decided to take Avonex because its once-a-week regimen is more conducive to her unpredictable schedule.  

Dina’s current symptoms include periodic pins and needles sensation triggered by stress and grief, periods of lassitude (weariness) when stressed, and optic neuritis post-delivery. Exhaustion can trigger a mild relapse where she begins to re-experience the pins and needles sensation in her feet. Her symptom management for fatigue consists of stopping, sitting, and meditating or pushing through with the aid of caffeine or dark chocolate. In her daily life, Dina’s pins and needles sensation can occasionally prohibit her from doing certain tasks. She is also bothered by heat as it can make her feel like she is “slogging along.” Dina sees a chiropractor and an acupuncturist for symptom management. Dina is hesitant to share her MS diagnosis with others because of the invisibility of her symptoms and, therefore, has only shared her diagnosis with a few people, although her coworkers were very supporting and very encouraging when she shared. Dina and her family buy their own insurance, which has resulted in a lot of negotiation with her insurance company and navigation of different health insurance plans. Dina receives copay assistance for Avonex from the drug manufacturer Biogen Idec. 

Though MS can impact her daily life, Dina does not let it stop her from doing things she wants to do. When she does need to ask for help, she feels fortunate to have people around her that make it work, especially her supportive husband. Ai chi, deep breathing, and meditation have been integral in helping Dina find peace and stay level and focused. Dina keeps her MS in a thankful perspective by choosing to focus on how fortunate she is to have a robust support system, medication, and insurance coverage.  

 

Dina felt overwhelmed by information when she was diagnosed.

Dina felt overwhelmed by information when she was diagnosed.

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And I just remember sitting at my desk and crying because I didn't know-- I was overwhelmed. Everything came with VHS tapes. So, I got a stack like this of boxes with info and pamphlets and information and videos, and all kinds of information that's like, here's a whole bunch of information for you to review. And it was good to have that. It was good that there were all these resources, but it was so overwhelming. And I just remember feeling just beyond overwhelmed with the idea. It was like, oh my gosh, I've got to go through all of this information and figure out what's going to be best. 

 

Dina prefers injections to other ways of taking disease modifying therapy.

Dina prefers injections to other ways of taking disease modifying therapy.

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So, the three original medications are all injection-based, which is not the case now. But at that point, I had to be OK with an injection happening. I don't have a fear of needles. It wasn't an issue. But I determined with Avonex©, doing that one time a week worked well for my schedule, my world, my lifestyle, and I could do that.  So, at that point, the Avonex©, it comes in both forms, but it is now in an autoinjector. So literally, I have to do nothing. So, I'm very happy with that, and that has consistently allowed me to stay on a pretty good schedule. And with the variety of medications now, I know my life does not lend for me to take something twice a day at regular intervals, like at 7:00 and then 7:00. There's no way my schedule is soft enough to have that, hard enough to have that kind of rigidity, because I do a lot of things and I keep weird hours sometimes. So, to me, I can do my injection when works for me, and that is really pleasing. And enough of the other things, like the infusion and so forth, have deterred me also because of PML risk. I'm like, well, the Avonex© is working and I'm good and there's no PML risk to that, so why do I want to switch to something that might be, excuse me, a monthly or quarterly injection or infusion, or anything like that? 

 

Dina worked with a nurse educator to administer her medication.

Dina worked with a nurse educator to administer her medication.

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The nurse educator came out, we went over a couple of new tools or tips that I could use, and that's alleviated that problem. So that was something that mentioning to my neurologist was very helpful. And she caused me to make that call. But you can call at any time to have a nurse educator work with you and come out, which I think is really valuable with Avonex©. And there was one time where I had a problem with the needle, and it came apart from the auto injector. And it was 11 o'clock at night on a Saturday, and I called the phone number and left a number on the automated system, and within two minutes I got a phone call back from a nurse educator to walk me through what happened, we'll file a claim on this and see what happened, we'll get you a replacement injection, but you know, X, Y, and Z, we think this, or this did not happen. And that was very helpful. 

 

Dina has had periods of stopping medication use for different reasons.

Dina has had periods of stopping medication use for different reasons.

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INTERVIEWER: So, you mentioned earlier that there have been periods where you've gone off the medication? Can you talk about those? 

Sure. And there are times where I'm trying to conceive, and also then when I was pregnant, and then when I was nursing. So, some of them happened in pockets, and then some of them happened continuously. And there are definitely times where I was like, I am done with taking injections and I would literally take a three- to six-month break for it.  Because it was one thing I couldn't add to my life at that time, which is kind of ironic that it would keep me on track. And every time I say it out loud, I'm like it's so stupid. But it is where I was. I've been at those different points. Being off of it, the times where I was off of it significantly, I did not have any problems.  

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So, I know I feel very fortunate that that's not—I do not fall into the group of people that have a relapse the second they stop taking their medication. And I know that. And I know I take that advantage and I push it a little bit. But sometimes it's for my mental well-being that I need to not do it. So that's that.

[Healthcare and Treatment: Experiences of Being on Disease Modifying Therapies]

 

Dina researches deductibles, copays, and specialist options during open enrollment windows.

Dina researches deductibles, copays, and specialist options during open enrollment windows.

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But as a matter of fact, our insurance is going to renew now for January. So, this is part of my job this month that I've got to look at, is compare the different plans. So, it'll be one company that we'll stay with, but of course, every company has a multitude of plans from bare bones down to bells and whistles. So, I have to look and see where my coverage for appointments is going to be, and I have determined that sometimes it's better to take a lower deductible if it means my specialist visits to my neurologist or anyone else is going to be higher.  So instead of being $45 it's going to be $65 because I only see my neurologist a couple of times a year. And so, if you factor specialist visits, maybe that's about $100, that's going to be a much larger savings for me than looking at what the deductible is going to be.  So, I have to spend a lot of time, and I personally take that on in our family because I have some background and knowledge about it. But it is overwhelming, and if you are someone who has never done that before, my God, it could be-- you would just pick a plan and you may not actually ever know that that's the right thing that's for your coverage, for your health, for your insurance, for your prescriptions.  So, I specifically go, and I look to see what the cost of the deductibles, the specialist visits, MRIs, if I'm going to be paying fully for those until a deductible, or if I pay-- not a copay, a partial payment? It's called something else. Coinsurance, that's what it's called, I think. And prescription coverage, because right now Avonex© monthly runs $6,000, which if you don't look at your information right, you could be completely screwed.

 

Dina encourages learning about drug manufacturer copay support.

Dina encourages learning about drug manufacturer copay support.

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I know I got information from the company sent to me because they want you to stay on your drug, so they're always marketing to you, and I think that that's one way to ensure you stay on their medication is to offer copay assistance, because they want people to stay on their medication because-- for so many reasons. But I think it's more marketing. But it still helps a lot of people. And I know though, if I went into my doctor's office if I said, hey, you know, I was having a hard time paying for my prescription, there's like literature and brochures and information about call the company here, or we'll help you, we'll have so-and-so in the office connect with you, but you have to ask for that.

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So, I've never found that that's been a question anyone has ever asked me in any of my experiences with any medication. Like, will you be able to get coverage for this? Will it be covered? It's just like, here's your script, go to, and you hopefully will figure it out. Again, I think I'm savvy enough and I'm knowledgeable enough about it that I call companies and find out, but I always tell people though, when they say, “Oh, it's so expensive,” call the company.  Find out if they have copay assistance. Find out if they're doing a trial where you get your first six months free or something like that. You have to ask. And that's hard, because if you're already overwhelmed with your disease, to add that onto your list of crap to do, it's one more thing to do.

 

Dina finds it difficult to decide who to tell about MS.

Dina finds it difficult to decide who to tell about MS.

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INTERVIEWER: So how do you make decisions about who to tell about your MS?  
RESPONDENT: That's really hard, and I have found that the platform of being very open prior to my move up here, up in [LOCATION], was very open, and when I talked to, I shared information with. But I'm really much more reserved when I came up to here, because everyone I talked to had someone or some story about someone that they knew with MS that was some debilitating story, or just like, “Oh, isn't it awful that they have?” And even some of my closest friends up here, it took a long time for me to tell them. Because, again, no one saw any disability, because I don't have something that's overtly noticeable, that it wasn't necessary for me to say these things. And it really only was until I had the optic neuritis, and I was like, maybe I shouldn't drive. It was minor and I could drive, but it was something that I just would be more comfortable . . . that I intended not to do if I didn't have to. So, deciding who to tell is really difficult, and I found that people are generally positive, but I have really closed that loop of the number of people that know that are new friends to me are few. And it's mostly because, who knows? If someone is going to see this on a website, they'll be like, I know that person. I won't care, but I do find that people seem to have some kind of story to it that just makes me batcrap to hear that be the experience of like, “Oh, that's so terrible. Is it bothering you today?” Like please. So that's my knee jerk reaction with that. And the job I have been employed with up here, I have not told at all. And well-known in my old workplace in New York that I did, to the point where my assistant would make time for me to use the office bathroom on Friday afternoon so I could do my injection uninterrupted. I didn't feel like the closeness, the support would be there in my jobs up here that was necessary.  

 

 

Dina worried about possible symptom relapse or flares postpartum.

Dina worried about possible symptom relapse or flares postpartum.

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When I moved up here, I literally only had three neurologists over this time period, and two since I've been in [LOCATION]. And both of them up here were very receptive. My first neurologist, when I moved up here, a lot of people, a lot of women experienced side effects after having babies. There was a lot of relapses. So, she did a little bit of the doom and gloom post-pregnancy, in the effect of, “Oh, well, you may not be able to nurse because you'll need to go right back on your medication,” which I was really not OK with because I really wanted to be able to nurse. That worked out for me and for my child, and that was something I was going to do, even if it meant I had to postpone going back on my medication. I feel like it was a fairly positive representation. I also wasn't going to let it stop me from having kids, if I was able to and wanted to.  

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