Multiple sclerosis (MS) is a mysterious disease. It can start in young adulthood, among people who are otherwise in the prime of their life. The causes are not completely understood, and the symptoms can come and go unpredictably. Some people are severely affected, while others are not. There is still no cure, but new medications, called disease-modifying drugs, are changing the course of the disease for many people.
Given this, it's not surprising that MS myths are common—but the facts tell a different story.
Myth: multiple sclerosis is a fatal disease
MS is not a fatal disease or terminal illness. A terminal illness is a disease that's expected to cause death in a relatively short period of time, with no possibility of recovery. For most people with MS, that's not an accurate description of the disease. Most people with MS live 40 to 50 years after being diagnosed because long periods of recovery, known as remissions, are possible. That was the case even before disease-modifying drugs became available. In fact, the average lifespan of a person with MS is just six or seven years shorter than that of a person who doesn't have MS, and that may improve as disease-modifying drugs become more widely used.
Myth: most people with multiple sclerosis end up in a wheelchair
Most people with MS never lose the ability to walk. The most common type of MS is called relapsing-remitting MS. With this type, symptoms come and go, and there may be long periods of remission. Some symptoms may become permanent over time, but this type of the disease rarely becomes serious enough to require the use of a wheelchair. About 15 percent of people with MS have a type called primary progressive MS, with symptoms that get worse over time without remissions. People with primary progressive MS may need a wheelchair to manage daily life.
Myth: multiple sclerosis is an inherited disease
You can inherit the genes that put you at higher risk for MS, but the disease itself is not inherited. In other words, about 200 genes have been found that may increase your risk for MS. These genes can be passed down through families, but inheriting MS genes does not mean you will develop the disease. In fact, even if one identical twin has MS, the other identical twin (with the same genes) has only a 25 percent chance of developing MS.
Myth: it is easy to tell when someone has MS
Symptoms of MS come and go, and many common symptoms, like fatigue and tingling or numbness, may not be noticeable to others. People with mild MS or MS in remission often go about their daily lives without showing any obvious signs of disability. It's even possible that the actual number of people living with MS may be much higher than known because some people with MS may have symptoms so mild that the condition is never diagnosed. However, having invisible MS symptoms can be upsetting because other people may assume you're just fine, even though you're struggling.
Myth: women with multiple sclerosis should not get pregnant
Pregnancy does not make MS worse, and if you have MS, the risk of passing MS to your child is less than 3 percent . Women used to be advised not to get pregnant, but today it's known that most women actually have fewer MS symptoms and flare-ups during pregnancy. Pregnancy seems to stop disease activity for a while, and no pregnancy complications are more common in women with MS. The only caution is that the stress of delivery or the hormonal changes after having a baby may increase the risk for a relapse in the six months after giving birth.
Myth: multiple sclerosis affects your body but not your mind
Cognitive impairment is one of the invisible symptoms of MS and may affect up to 50 percent of people with MS. Cognitive impairment includes symptoms like memory lapses, poor judgment and difficulty with focus and concentration. Depression may be another symptom of MS. Depression is common in people with MS, and it used to be thought that this resulted from living with an unpredictable, long-term disease. We now know that it actually may be related to brain changes caused by the disease.
Myth: treatment does not stop the progression of multiple sclerosis
Disease-modifying drugs have changed the course of MS for many people. These drugs can reduce the frequency of MS relapses and slow down the progression of damage to the brain and spinal cord, which is the cause of MS disability. A number of disease-modifying drugs are currently available in the U.S. If one of these drugs doesn't work for you, another might. Disease-modifying therapies have also changed the way doctors think about MS. Steroids used to be the only treatment for MS, but those drugs can only help you recover from an MS attack, not slow the progression of the disease. There's still no cure for MS, but because of these drugs, MS is now considered a treatable disease.
- NIH, Multiple Sclerosis Information Page https://www.ninds.nih.gov/Disorders/All-Disorders/Multiple-Sclerosis-Information-Page
- MS Trust, MS: the facts https://www.mstrust.org.uk/about-ms/what-ms/ms-facts
- Spring J, Beauregard N, Vorobeychik G. Multiple Sclerosis: Myths and Realities. BCMJ, 2006;46(2):72-75. https://www.bcmj.org/articles/multiple-sclerosis-myths-and-realities
- National Multiple Sclerosis Society, Diagnosing MS https://www.nationalmssociety.org/Symptoms-Diagnosis/Diagnosing-MS
- NHS, Causes Multiple Sclerosis https://www.nhs.uk/conditions/multiple-sclerosis/causes/
- Multiple Sclerosis Foundation, Treatments for MS https://msfocus.org/Get-Educated/Treatment-for-MS.aspx
- National Multiple Sclerosis Society, Relapsing-Remitting MS (RRMS) https://www.nationalmssociety.org/What-is-MS/Types-of-MS/Relapsing-remitting-MS