Since I am both an MS specialist and someone living with MS, a lot of people are curious about which medication I am taking and how I chose it. MS research has come a long way in a relatively short period of time, and as a result we now have more treatment options than ever before. This means most of us will have the opportunity to decide whether to start medication, and if so which one. And since there are now so many medication options, we can choose to try a different medication if we are having side effects, sick of needles, or if our MS worsens. As a result, many of us have to face difficult treatment decisions multiple times throughout our lives.
Many people feel overwhelmed when choosing a treatment -- including me! Even though I specialize in making treatment decisions for others, it’s still incredibly difficult to do for myself. My treatment journey has not always been smooth, which can be extremely frustrating and discouraging. Since being diagnosed I have had multiple relapses and new lesions while on three different medications, and I had to stop one because of side effects. This means I have faced that difficult “which treatment?” decision over and over again. When I am trying to decide what to do, “Stephanie the MS Specialist,” and “Stephanie the MS Patient” often clash with one another. On the one hand, I know that new lesions and relapses mean I’m not on the best medication, and the MS specialist in me knows that switching medications makes sense. But as a patient, the long lists of medication side effects and the unknown of whether it will work for me are overwhelming to think about, especially while I’m also facing the emotional and physical effects of my MS worsening.
My priority is finding the treatment that will keep me at my best, but fear of the unknown always creeps back in. In difficult times I often turn to my loved ones for guidance and advice. I also find encouragement in the MS community, and often reach out to a friend who has been on the medication I am considering. Throughout my MS journey, I have received a lot of support and guidance, but two things in particular have gotten me through tough times:
1. Reminding myself that MS itself has side effects. Yes, the side effects and potential risks of disease-modifying treatments can be daunting. But MS is the No. 1 threat to my health and well-being. It has already affected my vision, mobility, sensation, and bladder. It has threatened my career and relationships. I have had to learn to live with pain, weakness, spasticity, and heat sensitivity. MS has side effects that I am not willing to risk.
2. Leaning on my neurology team. My doctor has taken the time to get to know me, my health history, my lifestyle, and my goals. This makes me feel confident that we are picking the treatment with the best chance of success and the lowest risk for side effects. We always come up with a plan to prevent and detect side effects in advance, and I know they will support me if something does happen or if I cannot tolerate a medication. And the teamwork does not stop once treatment has started: I am vigilant about seeing my neurologist regularly, getting my blood work done, and going for my routine MRIs.
For now, I am hopeful that my current medication will finally prove to be the right one for me. It would be nice to get a break from making tough decisions for a little while.