So you’ve been recently diagnosed with MS. Most likely you’ve had several doctors’ visits, undergone multiple tests (e.g. MRI, lumbar puncture, evoked potentials) and begun researching the disease, only to become completely overwhelmed and frightened. You’ve probably missed some work so coworkers and employers may suspect that something’s up. Maybe your neurologist prescribed high-dose steroids to treat an exacerbation which can cause its own unique emotional roller coaster.
What should you do?
First of all, take a deep breath; then take another deep breath. Know that the odds are strongly in your favor that you will continue to live a productive and enjoyable life for many years to come–despite being diagnosed with an incurable, progressive disease. You do not need to make any drastic lifestyle changes and should avoid making any life-changing decisions in the immediate future. Now is the time to focus on information, support, and planning for your future.
Learn about the disease
Persons who are newly diagnosed with MS face a steep learning curve. Obtaining accurate information about what to expect and what to do about symptoms is the foundation upon which to build a strategy for living well with MS. Likely your first source of information has been your neurologist, MS nurse, or other members of your health care team. They are well equipped to give you personalized information regarding what you need to know at every step of your journey.
Knowing what websites and forums provide accurate and reliable information may be challenging at first. Fortunately, several MS-related patient advocacy groups provide educational materials, in print and online, including the National MS Society (nmss.org), Multiple Sclerosis Association of America (mymsaa.org), and Multiple Sclerosis Foundation (msfocus.org). These organizations publish quarterly magazines, to which you can subscribe for free, and offer support and services to people with MS. I also recommend the Multiple Sclerosis International Federation (msif.org), Consortium of MS Centers (mscare.org), NARCOMS (narcoms.org), and the Accelerated Cure Project (acceleratedcure.org).
Word of advice: Take your time learning about the disease. Start with topics which pertain to your specific symptoms and realize that not all of the information you find will pertain to your situation or needs at this time. You can also connect with other MS patients on the numerous blogs, forums, and Facebook groups dedicated to the topic.
Take care of yourself
As you begin to learn how MS affects you personally, you will discover what helps you feel your best. From day one you can focus on staying healthy through diet and exercise. Eating high-quality food, such as cold-water fish (e.g. salmon), fresh fruits and vegetables, nuts, and whole grains, while avoiding highly processed foods will provide your body with quality nutrients. Supplements, such as vitamin D, can be helpful in combating MS. First, however, discuss all supplements and medications you take with your neurologist.
Exercise, which can reduce fatigue and help you maintain strength, does not need to be strenuous. Moderate-intensity aerobic exercise in short sessions, such as five three or four-minute bursts of exercise with two-minute rest periods in between, can improve fatigue and health-related quality of life. But exercising past the point of fatigue may actually prevent you from sticking with an exercise routine. It can be helpful to work with a physical therapist who specializes in neurological disorders.
Another important strategy for taking care of yourself when you have MS is using one of the 14 disease-modifying therapies (DMTs) that have been FDA-approved to reduce the frequency of clinical relapses and slow down neurologic disability. Some of the DMTs are also approved for use in clinically isolated syndrome (CIS) and progressive forms of MS with relapses. Currently, no DMT is approved for use in primary-progressive MS. Aubagio, Gilenya, and Tecfidera are oral medications. Avonex, Betaseron, Copaxone, Extavia, Glatopa, Plegridy, and Rebif are self-injectable medications. Lemtrada, Tysabri, and Novantrone are intravenous, infused medications.
The symptoms you may experience with MS can often be helped by a combination of traditional drug and non-drug therapies as well as complementary and alternative (CAM) approaches. Talk to your doctor about which disease-modifying therapy may be right for you.
Protect your financial future
As MS symptoms can affect one’s ability to stay physically and socially active, you may question whether you can continue to fulfill duties at work and home. Many people with MS are able to stay employed for a long time beyond diagnosis. Protect your financial future by not making any quick decisions regarding quitting your job. Keep in mind that there are laws designed to protect you in the workplace. While you do not need to tell your employer that you have MS, if you request workplace accommodations under the Americans with Disabilities Act (ADA), you will need to provide information regarding your specific needs. Learn about your legal rights in free, self-paced, online courses providing an overview of disability rights laws and the Americans with Disabilities Act (ADA).
MS can be a very expensive disease so maintaining health insurance is vital to obtaining ongoing medical care. While employer-sponsored health insurance probably still provides the widest options for health care coverage, more options are now available for patients with preexisting conditions under the Affordable Care Act. Be aware that if you do become disabled and apply for federal benefits, Medicare coverage doesn’t begin until 24 months after you are awarded Social Security.
Finally, being diagnosed with a chronic disease can be a great catalyst for getting your finances in order. Consult a certified financial planner to assist you in organizing your accounts and investments to maximize return. Fully fund eligible retirement accounts as you are able. You may also want to look into long-term care insurance.
Each person’s experience with MS is unique and it is difficult to predict what will happen in the future. But in talking with hundreds of persons living with MS, I’ve found that we all seem to have one thing in common. The first year after diagnosis is one of great change and emotions can run the gamut. Be patient with yourself and don’t hesitate to let others know how they can help.
Updated February 12, 2015
Lisa Emrich is a patient advocate, accomplished speaker, author of the award-winning blog Brass and Ivory: Life with MS and RA, and founder of the Carnival of MS Bloggers. Lisa uses her experience to educate patients, raise disease awareness, encourage self-advocacy, and support patient-centered research. Lisa frequently works with non-profit organizations and has brought the patient voice to health care conferences and meetings worldwide. Follow Lisa on Facebook, Twitter, and Pinterest.