You’ve got multiple sclerosis (MS). Now what? 5 Ways to Take Control
Written by Ann Pietrangelo
Even before I learned I had MS, my neurologist showed me charts and graphs and information about treatment options. Once the diagnosis was official, however, I needed more than that. I had MS, an incurable, chronic illness that would be with me always. Now what? That’s what I asked myself back in 2004, but it would be several years before I felt some measure of control.
If you’ve been recently diagnosed with MS, you may be asking yourself the same question. Your neurologist has spoken about disease-modifying medications and symptom management, but you instinctively understand that life is a bit more complicated than that. You still have family, work, and social obligations. You still have a life to live, only now MS is along for the ride. Now what?
Don’t expect doctors to anticipate your questions, because each patient has a different set of concerns. Become a partner in your health care. Use reputable sources (there are a lot of scam artists out there) to learn all you can about MS. It’ll help you ask the right questions. Prepare for your appointments by making a list of questions, and take notes while you’re there. In between visits, it may help to keep a journal, noting details about your symptoms. If your neurologist won’t take your concerns seriously, it’s time to find a new one.
Reach out to others with MS…
Other people with MS can share valuable insights about coping with the disease. We can offer each other tips and point out some of those reputable sources for educational materials, patient assistance programs, and managing daily symptoms. Sometimes, it helps just to know that you’re not alone in this thing. You may even find comfort in supporting others.
…but don’t compare your MS to anyone else’s.
MS is an unpredictable disease that that affects each person differently. As much as we have in common, we’re not the same. You may have already noticed that some people with MS have debilitating symptoms, while others are strong and athletic. The range of symptoms and the severity of those symptoms vary tremendously from person to person. MS is a disease of scar tissue, or lesions. Symptoms depend on where those lesions form and how active they are. Your age, treatment and lifestyle choices, and other health issues make a difference, too. It’s a very individual disease, so don’t get too hung up on how you stack up to others.
MS is unpredictable, that’s for certain. If you have relapsing-remitting MS, you can go from running a marathon one month to not being able to walk across a room the next. That’s why it pays to be flexible. It’s always a good idea to have a “plan B” in place, just in case. It’s also smart to take advantage of assistive devices when you need them. If using a cane or a special parking pass help you get around, it doesn’t mean you’re giving in to MS. Quite the contrary. It means you’re finding solutions and making adjustments — signs that you’re taking control over your own life.
Don’t get stuck in place. Do some living.
As overwhelming as life with MS may feel at times, you can’t let yourself become all about MS. Identify your personal strengths and take advantage of them to the best of your ability. Continue to participate in things you enjoy. There is life after a diagnosis of MS. It may be a different from the one you had before and certainly different from the life you anticipated, but you’ve still got a whole lot of living to do.