ASK ME MS

KATHY: Hello, and welcome to Ask Me MS. Today, we're answering questions that we got from other people in the MS community. And I'd like to start with one that I know we all share, and a lot of people ask me: I just got diagnosed. Now what?

JESSICA: When I was first diagnosed with MS, I had a lot going on. I was a newlywed, and I was in graduate school, and I was working full-time as well.

KATHY: Yeah. You were busy.

JESSICA: Super busy, super busy.

KATHY: You didn't need a mess in your life, did you?

JESSICA: No. No. And it was crazy to think of having MS, because I didn't know what the future was going to look like. Would I be able to accomplish those goals? Could I have a child? Would I finish graduate school? Would I continue to work? And now looking forward, I've been able to see that I have been able to accomplish all those goals. I went on to have a child, and he's almost 15 now.

MOLLY: Wow.

JESSICA: And I've been very thankful. I finished graduate school, but it wasn't perfect. I had to make some modifications along the way.

KATHY: I would always say, just breathe, because you remember hearing those words, right? "You have MS." It was so frightening, and it was shock and awe for me. But then I found a doctor that really resonated, and we talked through what I wanted from my life. And instead of MS dictating it, I got to dictate it, with my doctor's help and figuring out what medication was right, and what sort of ancillary complementary therapies could be helpful.

JESSICA: One of the questions that I get often is: How has life changed since my diagnosis?

KATHY: I was at a point where I had kids already, 4 and 6, and for me it was really having to prioritize myself, which, when you have littles, that can be really tough. I mean, your entire world revolves around these kids, right? And I had to take a step back and take care of myself. And I guess MS kind of gave me permission that I somehow needed to take better care of myself, and just be mindful and notice every gift that every day is.

MOLLY: Yes.

KATHY: So oddly, it was a gift in that way.

MOLLY: Yeah. It's not selfish to take care of yourself.

KATHY: It is not.

JESSICA: No.

KATHY: But I think moms need reminders.

MOLLY: Right.

JESSICA: We all need reminders.

KATHY: We do.

MOLLY: So, one question I often get asked is, MS can be so unpredictable. How do you plan for the future?

KATHY: How do you do it?

MOLLY: One thing I would like to think about is putting myself in the driver's seat, and MS in the back seat. I am taking charge. I’m managing my medication. I'm managing my health and wellness. And with putting that whole package together, I'm able to live a full life. And I'm so grateful for that.

KATHY: That's a great way of looking at it. I love that. So, what part can we play? What can we do to get on top of even if it is unpredictable? Well, I think having a commitment to my own health, and that's everything from mental health to physical health. And for me, that's eating well, and it's moving every day, and it’s surrounding myself with positive people and having a positive outlook. It's all important. And having that commitment to my health and wellbeing is beyond predictability.

KATHY: So thank you all for sharing your experiences today. As we know, it can feel like your life's turned upside down when you get an MS diagnosis, but it's so good to know that you're not alone.

Everyone’s experience with multiple sclerosis (MS) is different. Your healthcare provider should always be your primary source of information. The people in this video are paid spokespeople for Biogen.

JESSICA: Welcome to Ask Me MS. We’re here answering questions from the MS community. Some of us may find that it can be challenging to stay on our MS treatment. I know one of the questions that I get sometimes is: I feel fine. Why should I stay on my MS treatment?

KATHY: I'll take it, because I did that. And I thought it wasn't that I felt fine, it was that I didn't feel fine. I thought, "I'm just going to dump this treatment and go rogue for a while and just see how I feel." I felt great, right up until I didn't. I had a fat relapse that I still have some symptoms from. I got right back on treatment, and I have done so much better since. Whenever I get this question, I share that story. You get to make your own choices in life, but my experience has been, I was on it and I was doing well. I went off of it and I wasn't doing well. I'm back on it and I'm doing well, so I'm staying on it.

MOLLY: I have a similar situation. I wasn't diagnosed, for about 7 years, so I wasn't on treatment. Finally, when I got the results of an MRI, I had progressed significantly and had 15 new lesions in my brain and spinal cord. My doctor said to me, "You need to get on treatment immediately." And I haven't been off of it since, and I have had no new lesions and I'm doing well.

KATHY: That's great.

KATHY: I get this question a lot on social media: What do you find is the hardest part about staying on treatment?

KATHY: It reminds me of when I was very first diagnosed. I didn't know what I didn't know. I looked at my medication like it was my gold, and it's what was going to keep me moving. Come hell or high water, I was going to make sure that I was on that treatment. I didn't feel great. In retrospect, I had a lot of side effects, but I didn't know if that was from the drug or if that was MS. I kept taking it, I didn't talk to my doctor. I just assumed, be strong, this is MS. When I did mention it to my doctor and we switched, I got on the right drug, but that can be really challenging.

JESSICA: That's such a good point, in terms of talking with your doctor, when you have experienced side effects and symptoms. I know through my journey of living with MS I've been on a couple of different treatments, and every single treatment I've been on, I've had side effects, when I first start the treatment. I know it's been so important for me to talk with my doctor and communicate with him, to let him know, because that's ultimately what's going to help me to stay on my treatment.

KATHY: I think the key is talking to your doctor.

MOLLY: One question I'm often asked is: How do you stay motivated to stay on your treatment?

For me, to be honest, in the beginning, it was really challenging, because it was a constant reminder that I had MS. That it's a chronic disease, and that I'm going to be dealing with this for the rest of my life. But then I reframed it as an opportunity to fight it and to be healthy and to keep myself in the best way possible.

JESSICA: I know, for myself, one of the things I have is a mindset. There's a lot of things I want to do, and I believe that my treatment is a tool to help me live well with my MS. I'm lucky that it is available to me. It helps me to motivate me to have my goals, and to live as healthy and well as I want to.

JESSICA: Thank you, for sharing your experiences. If you find yourself unmotivated or you're dealing with side effects, it's important to talk with your healthcare team.

Everyone’s experience with multiple sclerosis (MS) is different. Your healthcare provider should always be your primary source of information. The people in this video are paid spokespeople for Biogen.

MOLLY: Welcome to Ask Me MS. We're here today answering questions that the MS community has asked. So, let's get right to our first question: How do you know if your MS treatment is working for you?

MOLLY: Jessica, do you want to answer?

JESSICA: One of the ways that I've known if my treatment is working for me, it's actually a hard experience: it was learning that my treatment wasn't working for me. And I had a pretty significant MS relapse. And during that time, my healthcare provider and I worked together as a team. And I was very fortunate to work with him to find out all the other treatment options, what the side effects would be, discussing potential risk versus benefit. And we ultimately made a shared decision, and I started a new treatment.

KATHY: Yeah. I think that's a great point. First of all, communicating with your doctor, right? But I've learned over the years that if I have a new or worsening symptom, I'm going to pick up the phone and call my doctor right away, just even to document that and see any trends that might be established, and ask their opinion, like, "Is my medication still appropriate? Is it time to have a discussion about potentially changing now or not?"

KATHY: So I get this question a lot: What would be a reason to consider changing your MS meds?

KATHY: For me, I didn't know what I didn't know. So, I didn't know to talk to my healthcare provider. I assumed that the side effects I was having was actually MS. I didn't know it was the meds. I call my healthcare provider immediately and let them make the decision.

MOLLY: Yeah.

KATHY: And then we have this conversation, you know, "Is it working? Isn't it working? Is it time to discuss something new?"

MOLLY: Right. That is the question I ask all the time at my appointment with my neurologist. I say, "Am I still on the right treatment?" And with new treatments coming out and looking at my labs and looking at my MRIs, right now he says, "Yes, you are good." But that's a question I think about all the time.

JESSICA: I know that making treatment decisions can be really tough. How did you feel about switching treatments? Were you worried?

MOLLY: Absolutely. My healthcare provider and I talked about what I was going to do. I had a number of side effects and decided that there was an option that could be better for me. And so, taking all that into account, I decided it was time to do it. Of course, in the beginning, it's a little bit scary.

KATHY: I think it's only natural. Anything new you're going to be nervous about, right?

JESSICA: Right.

KATHY: So, I think working closely with your healthcare provider makes all the sense in the world. Ask all the questions that you've got. Express your concerns and your worry, right? Let them help you make the right decision for you.

MOLLY: Thank you both for sharing your experiences with us today. There can be many factors that go into deciding if a treatment is still working for you. And I know that can be really stressful.

Everyone’s experience with multiple sclerosis (MS) is different. Your healthcare provider should always be your primary source of information. The people in this video are paid spokespeople for Biogen.