One of the biggest challenges of living with multiple sclerosis is coping with the constantly changing state of the disease. It’s not unusual to encounter periods of severe symptoms followed by remissions. Knowing what to expect, how to manage relapses and cope with the overall progression of the disease goes a long way toward living the highest possible quality of life with MS.
It’s no small issue. MS presents serious lifestyle and treatment challenges. In the end, each patient must find a unique strategy and therapy approach. If you’ve received a diagnosis of MS—or if a doctor suspects that you might be developing the disease—here is what you need to know in order to live with the disease more effectively:
What a Relapse is and Why it Occurs: When your immune system attacks the myelin surrounding your nerves or spinal cord it disrupts the signals in the central nervous system causing weakness, numbness, or clumsiness. The lesions, areas of damage, can be seen on an MRI. This may result in a worsening of existing symptoms or cause entirely new symptoms. In many cases, these relapses occur without warning and the onset of symptoms takes place quickly. A relapse is defined as an episode that occurs at least 30 days apart from another event. A relapse lasts at least 24 hours but can run for days, weeks or months.
How Relapses Affect You: Depending on the type of MS you have and your unique situation, relapses may occur regularly or take place months or years apart. Ongoing relapses typically lead to a worsening of MS. In fact, studies show that those who suffer even one relapse during the first two years of MS are at greater risk for more rapid progression of the disease. Consequently, it’s important to develop a treatment and therapy strategy immediately and revisit it periodically. Doctors often use a tool called the Expanded Disability Status Scale (EDSS) to measure the physical disability associated with MS. Although this scale is complex and somewhat difficult to use, it provides insights into where you’re at in the progression of MS.
Preventing and Treating Relapses: One of the most effective ways to combat MS is to use medications that help slow or control the progression of the disease. Over the last two decades, researchers have developed several medications—including Avonex, Betaseron, Copaxone, Rebif, Gilenya, Tysabri, Novantrone and Extavia —specifically designed for MS. These drugs reduce immune response and inflammation. Doctors also prescribe high-dose corticosteroids such as Methylprednisolone for three to seven days. These drugs modulate the immune system, shortening the exacerbation and speeding recovery. Like all drugs, there are side effects, potentially serious if taken long term or repeatedly.
Other Approaches: A 2009 study at the University of Toronto showed that high doses of Vitamin D (more than 14,000 IU) may cut MS relapses. Researchers found that 16 percent of the study group consuming high dosages relapsed compared to 41 percent for those taking lower dosages. In January 2011, the American Academy of Neurology issued new guideline recommendations that promote the use of plasma exchange to treat patients with severe MS relapses. It recommends doctors consider using plasma exchange as a secondary treatment for severe flares in relapsing forms of MS and related diseases.
Remission: During a remission, some symptoms of MS may remain. The National Multiple Sclerosis Society defines a remission as a return to the baseline prior to the start of the last exacerbation. However, relapses may cause additional permanent damage or impediments—even after a lesion is no longer active. In fact, studies show that residual impairment is fairly common following an exacerbation. Upwards of 40 percent of MS patients see some deterioration after a relapse. Consequently, it’s crucial to manage and control MS from the initial diagnosis and prevent attacks whenever possible.
Participate Actively: One of the best ways to ensure that you are maximizing the quality of your life as an MS patient is to actively monitor and manage your disease. Here are a few steps you can take:
1. Become MS literate by reading and understanding all there is to know about research and advancements in treatment and medicines. A few good sources for information include:
- PubMed health, U.S. National Library of Medicine
- National Multiple Sclerosis Society
- MedlinePlus, National Institutes of Health
- Multiple Sclerosis Foundation
2. Monitor changes in the frequency and severity of relapses and episodes to better determine the degree to which your MS is advancing.
3. Engage in an open, honest and ongoing discussion with your doctor in order to understand when new or additional therapies may be helpful.
4. Participate in support and discussion groups to gain information and share thoughts and ideas about how to better cope with MS.