By Barbara S. Giesser, MD
First, the bad news. Multiple Sclerosis (MS), is a chronic, incurable, often progressive, and unpredictable neurodegenerative condition. The good news is that in the 21st century, with early diagnosis, prompt treatment, and numerous options for treating the disease and its symptoms, most people who are diagnosed nowadays can expect to lead full functional lives with MS mostly being a nuisance, rather than a source of significant permanent disability. Here are five basic strategies for not letting MS get the better of you.
1. Get smart! The best weapon against MS (or any disease) is information. What you don’t know really can hurt you. Talk with your physician and other health care professionals, and take advantage of printed matter, websites, webinars, and seminars sponsored by professional organizations such as the American Academy of Neurology, and voluntary health organizations such as the National MS Society. Information from these sources are vetted, accurate and reliable, which isn’t true of everything on the Internet. With this knowledge, you’ll have a better handle on what symptoms to watch out for, what your treatment options are, resources that are available in your area, etc. You can also find out how to access MS specialty care near you.
2. Partner with your neurologist. Gone are the days when doctors dictated how a patient’s health care would be conducted and the patient was merely a passive consumer. People with MS need to be involved in their treatment plan and actively decide what options they would like to pursue. This is because the most effective treatment for you is the one that best meets your specific needs. Be truthful when speaking to your doctor; he or she is only as good as the information they receive. For example, tell your doctor about any non-prescription supplements, vitamins, herbs, or other substances you are taking. Ask questions so you can make informed decisions. When possible, bring a partner or friend to doctors’ appointments you can be sure that all the important issues are asked about and answered.
3. Take responsibility for your health. The best medical advice in the world won’t do you any good if you don’t adhere to it. Keep regular doctor’s appointments instead of just going to the doctor when there is a problem. Try to note early symptoms that might signal an oncoming exacerbation or pseudoexacerbation (an exacerbation due to something such as an infection). Be conscientious about taking medications and following other instructions. If a medication produced a side effect or just wasn’t working, let your doctor know instead of just stopping it and not informing them. Optimal treatment for MS involves medications for both symptoms and disease modifying therapy. The former will make you feel and function better; disease modifying therapies help reduce the occurrence of relapses and new areas of nerve damage. Build a health care team. You and your neurologist can’t do it all by yourselves. Other health care professionals such as nurses, rehabilitation specialists, psychologists, other physicians (e.g. urologists) are invaluable in optimizing your care. Other professionals, such as vocational rehab experts and legal advisors, help you deal with issues such as health care directives and estate planning.
4. Live the good life. As science is elucidating more about the underlying mechanisms of MS, it is also becoming increasingly clear that lifestyle choices affect the disease substantially. While there are no dietary regimens that have been proven to modify the course of MS, a “healthy’ diet (one containing abundant amounts of fruits and vegetables, lean proteins, complex carbohydrates and polyunsaturated fats) will promote general good health and help to prevent common comorbid conditions such a hypertension and diabetes. Additionally while no vitamin or supplement has been proven to be beneficial in treating MS, data suggest that Vitamin D may be important in management and that low Vitamin D levels may increase the chance of a relapse. Ask your doctor about monitoring Vitamin D levels and what amounts of supplementation of this vitamin are appropriate. Another lifestyle choice that can affect MS is smoking. Smoking has been shown to increase the chances of MS progression and of course can cause other health problems.
5. Move it! Exercise really is your friend. Not only does regular exercise have the same health benefits for persons with MS as it does for people in general (increasing cardiovascular and respiratory fitness and bone health), but exercise has been shown to lessen some MS symptoms such as fatigue and depression, as well as increase muscle strength and flexibility. Additionally, data in animal models and a few human studies suggest that exercise might possibly ‘treat’ MS by increasing anti-inflammatory substances and increasing some nerve growth factors. So talk with your doctor or physical therapist about an exercise regimen that is right for you.
There’s certainly no good time to be diagnosed with MS, but now is a hopeful time with strategies that can help minimize the impact of MS, effective medicines that are available now, and new and more powerful treatments soon to come.
Dr. Barbara Giesser is a Clinical Professor of Neurology and Clinical Director of the Multiple Sclerosis (MS) Program at UCLA. She is the editor of Primer on Multiple Sclerosis. She has been specializing in caring for persons with MS since 1982. In addition to her clinical and research activities, Dr. Giesser has been active in educational and advocacy efforts through her work with organizations such as the National MS Society and the American Academy of Neurology. Watch Dr. Barbara Giesser interviewed on Extra.