Life with MS

        Each person who lives with multiple sclerosis wonders and worries about different aspects of life. What your concerns are depends on your priorities prior to diagnosis and the changes that occur through the years. For example, perhaps you love to exercise and want to make sure you stay as mobile and limber as possible; maybe you want to start a family, and wonder about what that means for your MS medications; or maybe you want to be sure you plan for your future financially, no matter what it may look like. In any of these cases, conversations with your healthcare provider can help you make sound and safe decisions. The first big question is how do you start a conversation that gets you the answers you desire?

            Let me lead with some perspective. Your MS doctor visits are not usually long enough to discuss all of your needs. (Heads are probably nodding.) The current demands of the healthcare system, including the necessity of documenting quality measures and the electronic medical record, may take meaningful time away from the conversation you would like to have with your healthcare provider. (More heads are probably nodding, including those of your providers.) Your healthcare provider has an agenda that may be different than yours. He or she needs to know about relapses, disability progression, symptom change, MRI change, any tests you need updated, any medications or medical issues that have changed, while perhaps you would like to talk in-depth about a physical therapy or cognitive rehab plan. Rest assured; your healthcare provider wants to help you achieve your goals!

            A scenario that is often relayed to me is this: Your provider drives the visit. You have a couple of minutes left to ask a question that you have been stewing over for months. Your provider answers it with a quick, general response that does not satisfy you (and probably does not satisfy your provider, either). What next? How do you advocate for yourself and your needs? 

            If your questions are not answered in an office visit, and you are told to schedule a visit in a number of months that seems too far away, you get to choose the next step!  I would suggest a comment like this to your provider: “I have some things I would like to discuss with you related to my lifestyle and planning for the future. I would prefer to schedule a follow-up in one month rather than six so we can talk about those.” And guess what? Relief fills the room. Your provider, who wants to be a resource on whom you can count, gets the chance to provide you with meaningful time. You know you will have a focused visit and get your questions answered. It’s a win-win situation.

            The second big question is how do you prioritize your less immediate healthcare needs? By less immediate, I mean the burning questions that wake you up in the middle of the night, like how long you will be able to work, when and if you will have memory issues, when and if you will need help with mobility. It may seem odd that I positioned these questions as second; however, usually the issue of how to have a conversation with your provider provokes more anxiety than developing the questions. So, I thought we’d just get that out of the way!

            Following is a list of questions that might stimulate your thoughts. Think about these as starting points for discussion with your family, support partners, and friends. Prioritize the issues as they are most meaningful in your life, then take them to your healthcare provider.

• Do I need a living will or healthcare surrogate? How do I create one? (By the way, the answer is yes, you should have one, no matter your age and whether or not you have MS!)
• Should I let my employer know I have MS? What can I do about this symptom that’s affecting my work?
• What is the Family Medical Leave Act? Should I have those forms filled out just in case? What about short-term and long-term disability?
• I am planning to start a family. What does that mean for my MS and for the medications that I take? What happens to MS in pregnancy and after the baby is born? Can I breastfeed? 
• I feel like I am slowing down when I move. Do you think a physical therapy evaluation would help me? 
• I have noticed that I can’t multitask like I used to. Would neuropsychometric testing be beneficial for me?
• Recently I find myself worrying about the future and the unknowns. Does counseling help people with MS? 
• We are thinking about remodeling our home. Would adding parameters for disability access be a smart move?
• I have noticed that when I eat certain foods, I don’t feel as well. Can you tell me how nutrition might benefit MS? Should I see a nutritionist?
• We need some help at home. What are my resources?

            No matter where you are living on the MS spectrum, at least one of these questions should resonate with you. While these are often the exact thoughts that produce worry and anxiety, getting them answered is an easy solution to calming those disturbing feelings.  I encourage you to work out your worries about these topics with your MS provider in order to improve your sense of well-being.