Multiple sclerosis is the most common neurological disease in young adults, usually striking between 20 and 40 years of age. Approximately 400,000 people in the United States and 2.3 million people worldwide have MS — and there’s one new U.S. diagnosis of MS every hour, according to the National Multiple Sclerosis Society. The positive news: MS symptoms can usually be managed successfully.
“Having MS today is much different from what it was in the past because we now have a number of new and promising treatments that do a good job at controlling symptoms,” says William Sheremata, MD, professor emeritus of clinical neurology at the University of Miami’s Miller School of Medicine in Florida.
Ways to Cope With Your MS Diagnosis
If you’re newly diagnosed with MS, these tips can help you manage the disease.
1. Learn as much as possible about MS. There are many myths and misconceptions about MS, and without the facts, your MS diagnosis can be scarier than it should be. MS is a chronic autoimmune disease affecting the central nervous system. It’s caused by the immune system attacking myelin, the protective insulation covering nerve fibers in the brain and spinal cord. Myelin is destroyed and replaced by scars of hardened tissue (lesions), and some underlying nerves are damaged. But MS is almost never fatal, and many people diagnosed with the disease never need a wheelchair. Your doctor can provide you with the latest facts about MS and what your prognosis may be. The National MS Society and the American Academy of Neurology are also reliable sources.
2. Be sure your MS diagnosis is definitive. MS is not an easy disease to diagnosis, so getting a definitive diagnosis can be a waiting game. Various tests may be used to make a diagnosis, including magnetic resonance imaging (MRI), evoked potentials (EP), and spinal fluid analysis (spinal tap), as well as a neurological exam. According to the latest criteria, your physician must do all of the following in order to make an MS diagnosis:
- Find evidence of damage in two separate areas of the central nervous system
- Find evidence that the damage occurred at least one month apart
- Rule out all other possible diseases and diagnoses
For many people, getting a definitive MS diagnosis is actually a relief — they now have a name for unexplained symptoms.
3. Understand that MS symptoms are unpredictable. No two people have exactly the same MS symptoms, and you may have different symptoms from time to time. MS symptoms can include numbness, blurred vision, loss of balance, poor coordination, slurred speech, tremors, extreme fatigue, problems with memory, bladder dysfunction, paralysis, blindness, and more. But these symptoms are unpredictable. “Over the course of the disease, some MS symptoms will come and go, while others may be long lasting,” Dr. Sheremata says. “It will be different for each MS patient.”
4. Don’t delay MS treatment. The goal of MS treatment is to control symptoms and improve the patient’s quality of life. After receiving an MS diagnosis, it’s important to start treatment as soon as possible. A number of FDA-approved medications have been shown to “modify” or slow down the progression of MS and lessen the frequency and severity of MS attacks. “The disease is more likely to progress and possibly lead to disability if you don’t begin treatment early in the disease,” Sheremata says.
5. Track your MS symptoms. Keeping a record of your MS symptoms and how you are feeling will help your doctor determine how the disease is progressing and whether the medications you are taking are working. This will also help your doctor recognize a relapse, which is characterized by a worsening of previous symptoms or the appearance of a new symptom that lasts more than 24 hours. If you think you’re having MS symptoms, write them down in a log. Include when the symptoms happened, details of what they felt like, and how long they lasted.
6. Avoid these MS episode triggers. Extreme fatigue is a common indicator of an impending relapse, which can last for days, weeks, or months. But certain triggers are thought to bring on relapses or make them worse. Stress, smoking, fever, hot baths, and sun exposure are believed to contribute to the worsening of MS symptoms and relapses. Additionally, drinking alcohol in excess is discouraged for people with MS because intoxication causes poor coordination and slurred speech, which can worsen or add to existing MS symptoms.
7. Find the right doctor for you. MS is a lifelong disease, so it’s important to be under the care of an MS specialist who is a good match for you. The neurologist who provided your initial MS diagnosis may not be the specialist you want to stick with for life. Your local chapter of the National MS Society should have a listing of nearby neurologists specializing in MS. Support groups for MS patients (available through hospitals and the National MS Society) are also helpful for getting doctor referrals.
8. Consider complementary and alternative medicine. In addition to taking medication to control your MS symptoms, you may want to consider complementary and alternative medicine (CAM), such as biofeedback, acupuncture, guided imagery, meditation, massage, tai chi, yoga, and dietary supplements. More than 30 percent of people with MS turn to complementary forms of medicine to relieve symptoms, according to a review of studies published in the journal Occupational Therapy International. These natural therapies were most used by MS patients for relief of pain, fatigue, and stress.
9. Think first about who you will tell about your MS. Announcing to your employer that you have MS could have an effect on your job security, employment options, and career path. Before disclosing the disease at your workplace, learn about your rights under the Americans with Disabilities Act. Of course, you’ll want to tell your closest family members and friends, particularly those who know you well enough to notice that something is wrong. But you are not obligated to share news of your MS diagnosis with everyone in your life. Instead, pick the people who will be most supportive and helpful as you begin to cope with the disease.
10. Don’t give up hope. Although there currently is no cure for MS, new treatments and advances in research may better relieve symptoms and even eliminate the disease in the future. Because MS strikes so many people in the prime of life, scientists are racing to find a cure, and a number of new MS treatments are currently under investigation.