Multiple sclerosis is often misunderstood, and for many people, the very name suggests things like permanent disability and visions of wheelchairs. The truth is that MS is a manageable disease, and a great many people with MS live active, fulfilling lives. That said, the progression of multiple sclerosis differs from person to person, so it’s hard to gauge how the disease will affect each individual. There are four recognized disease courses for MS, each of which may include mild, moderate, or severe symptoms. Let’s tackle some of the most common misconceptions regarding MS.
Myth #1: Multiple sclerosis is a fatal disease. MS is generally not considered a fatal disease. Statistics show that most people with MS have a near normal life span. Most deaths associated with MS are due to complications in advanced, progressive stages of the disease. Early treatment is aimed to slow down the disease progression and help prevent those complications. Infection seems to be a common complication. That said,** very severe cases of MS** certainly can shorten a patient’s life span. Please be aware that patients living with MS are still eligible (just like everybody else) to develop other life-shortening diseases such as cancer, heart disease, and stroke.
Myth #2: Since there is no cure for MS, there are no treatments for MS.
Wrong While it is true that there is no cure for MS, we do have treatments available to help manage the disease and the symptoms it causes. As of December 2015, there are 13 FDA-approved medications that have been shown to modify or slow down the underlying course of MS, including 3 oral options. More drugs may be approved soon. The wide variety of symptoms which come with MS are outnumbered by the many ways to manage those symptoms through medication, therapy, diet, exercise, lifestyle changes, and technology. A simple exercise routine, like regular walking, swimming, or biking, and a sensible diet rich in fresh fruits, vegetables, and whole grains can make a big difference. Talk with your doctor about all the things that you can do to make a positive impact on your quality of life.
Myth #3: Everyone with MS ends up in a wheelchair.
Not true. Many people living with MS remain able to walk unassisted, while a smaller number need the help of a mobility aid. Patients with MS may experience mobility issues at anytime depending upon the severity of their relapses and/or symptoms. Some of these patients recover their impaired mobility as the relapse or symptoms resolve. However the likelihood of needing a mobility aid increases the longer someone has MS. In addition, people who are still able to walk may use a wheelchair, cane, scooter, or other device to conserve energy or prevent injury from falls. Only 25% of people with MS use a wheelchair or stay in bed because they are unable to walk, according to a well-designed survey completed before the new disease-modifying drugs became available.
Myth #4: Multiple sclerosis isn’t a physically painful condition.
Even medical personnel may misunderstand this myth; I know an ER nurse friend of mine didn’t know that MS can be painful before we spoke last year. People often associate MS with numbness and mobility issues, but that doesn’t mean that many patients don’t also experience physical pain. According to one study, up to 55 percent of MS patients experienced clinically significant pain, whether acute or chronic, at some point during the course of the disease. There can be many causes for pain, one of the most common being those jumbled up and confused nerve communications which are responsible for various MS symptoms…including PAIN.
Myth #5: People diagnosed with MS should immediately quit work and go on disability.
There is no scientific evidence that the normal stress of working has any effect on MS. But symptoms, such as fatigue, can cause problems on the job and may need to be managed. Also, the Americans with Disability Act provides a way in which those who are disabled can receive appropriate accommodations in order to successfully remain employed and complete their work. Approximately 30% of people with MS are working full-time after 20 years. The National MS Society thinks that number could be higher, and works to change the attitudes of employers and employees alike. Stress-reducing strategies which may help to maintain an active lifestyle including learning to relax, breathing deeply, getting sufficient sleep, meditating, and exercising.
Myth #6: People with multiple sclerosis shouldn’t have children.
Pregnancy and childbirth have no long-term effect on MS. In fact many women notice that their MS symptoms decrease during pregnancy which is the reason why estriol is being studied as a potential MS treatment. However, the risk of an MS relapse does increase somewhat in the six months after delivery. In general, there’s no reason why women with MS can’t give birth nor be an excellent parent.
Multiple sclerosis is not classified as a hereditary disease, which means that you will not automatically pass it on to a child. There are studies, however, suggesting that children who have parents with MS may be more likely to develop the disease. Those who worry that their children will develop MS should know that the risk is actually very small: somewhere between 1% to 5%.
Myth #7: Multiple sclerosis only affects white people.
Seriously, I read this myth on another website and said “say what? who thinks that?” Well, I never have but then again I’ve been to NMSS events early on and saw first-hand the racial diversity represented. It’s true that the prevalence of MS in the United States is higher in whites than in other racial groups, but that doesn’t mean it affects only Caucasians. What’s more, according to a study supported by the National MS Society, African Americans with the condition are more likely to experience a more aggressive course of disease (something I’ve also not witnessed firsthand).
Myth #8: Multiple sclerosis is caused by heavy-metal poisoning, aspartame, poor diet or negative thinking.
Although scientists have yet to identify a single cause for MS, they do know that it’s not the result of a poor diet, negative attitude, or heavy-metal poisoning. A balanced diet and optimistic outlook are recommended for everyone. But there is no evidence that these types of lifestyle changes can cure multiple sclerosis. Current data suggests that MS is caused by a combination of environmental and genetic factors, with some studies indicating that hormones and certain viruses (like mumps, herpes, and chicken pox) may play a role. However, a conclusive link to any viral cause has not yet been found.
Aspartame is an artificial sweetener used in diet soft drinks and in some foods. It has been rumored to be associated not only with MS but also with illnesses ranging from seizures to Alzheimer’s disease. This is not true.
Heavy metals can be poisonous and may cause symptoms, such as weakness, that resemble those of MS. Some people believe that MS is caused by the mercury in dental fillings, but there is no scientific evidence to support this. Nevertheless, some people choose to have chelation therapy, ie, intravenous infusion of a heavy-metal–binding drug, while others have their dental fillings removed. Both are expensive and neither is beneficial for MS. Chelation can cause kidney damage.
Myth #9: Natural treatments are “safer” and more effective than prescription medication.
Controversy continues to rage about the value of alternative approaches to treating disease. Advocates of alternative therapies sometimes claim that conventional medicine is ignoring or suppressing treatments that can alleviate symptoms or even cure some diseases. Opponents of alternative therapies maintain that conventional medicine adopts whatever therapies can be proven safe and effective, and they challenge the advocates of unproven treatments to produce the scientific evidence that will substantiate their claims. No dietary claim has yet held up in scientific studies. However, for general good health, people with MS are strongly advised to follow the low-fat, high-fiber, varied diet recommended by the American Heart Association and the American Cancer Society.
Myth #10: Multiple sclerosis is easy to diagnose.
Not really. In fact, it can take years for an accurate diagnosis to be made for many patients. Symptoms caused by MS can be seen in many other diseases and conditions and these other possible causes must be eliminated before MS can be considered. The current diagnostic criteria is designed to make it EASIER to make a definite diagnosis sooner rather than later, but still requires that evidence of demyelination is seen at two points in time and in different locations within the central nervous system. This is why your doctor may say that you “probably” have MS but that you must wait and see if it develops into clinically definite MS (which it may never do). Being in limbo can be frustrating, I know from experience, but please DO NOT put your life on hold while you wait for the next shoe to drop. Remember that MS is a manageable disease and lots of support is available for patients who living with multiple sclerosis.
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.