To mark the start of Multiple Sclerosis Awareness Month, this week’s edition of Medical Myths will focus on the myths that surround this commonly misunderstood condition.
Multiple sclerosis (MS) is a chronic disease that affects the brain and spinal cord. It is a lifelong condition that causes neurological disabilities and a wide range of symptoms.
Globally, in 2016, MS affected an estimated 2.2 million people.
It is immune-mediated, and most experts believe that it is an autoimmune disease. In a person with MS, the immune system attacks myelin, the protective sheath substance that covers nerve fibers. This causes communication problems between the brain and the rest of the body.
Symptoms can affect any part of the body and include:
- numbness and tingling
- vision problems
- muscle spasms and weakness
- fatigue
- anxiety and depression
- pain
- mobility issues
- difficulty speaking and swallowing
In some cases, the disease slowly worsens over time, and doctors call this condition primary progressive MS. Other people experience “attacks,” or exacerbations, during which symptoms become worse or new symptoms appear. This is known as relapsing-remitting MS.
For some people, relapsing-remitting MS gradually worsens. The name for this condition is secondary progressive MS.
To date, it is unclear why some people develop MS and others do not, but environmental and genetic factors may play a role. Because it is not entirely clear why MS occurs, it is no surprise that myths have arisen and persisted.
In this article, we address nine of the most common myths and misconceptions about MS.
1. Everyone with MS eventually needs a wheelchair
This is a myth. In reality, the MS Society explain, “Most people with MS don’t use a wheelchair.”
Fifteen years after an MS diagnosis, only 20% of people need a wheelchair, crutches, or a cane to walk, the neurologist Dr. Loren A. Rolak reports in a research paper.
The MS Society also note: “If your MS does start to affect your mobility, the decision to start using a walking stick, mobility scooter, or wheelchair can be a difficult one. But once you start using one, you may find — as many people with MS do — how useful they are and how they can help you to retain your independence.”
2. People with MS cannot work
This is a myth. People with MS are valuable members of the workforce.
It is true that some people with MS face challenges and may need to change career paths, but this is not inevitable for everyone. On this point, the National Multiple Sclerosis Society report, “People living with MS often continue working long after their diagnosis.”
They also acknowledge, however, that “Some people with MS decide to leave their jobs when they are first diagnosed or experience their first major exacerbation, often at the suggestion of their family or doctor.”
The National Multiple Sclerosis Society explain that this decision, in some cases, may be made too quickly “and at a time when symptoms can color judgment. Disease-modifying therapies, new technologies, better symptom management, legal employment protections, and community resources can help you remain in the workforce.”
Indeed, having regular work can benefit people with MS, as the authors of one study explain:
“In addition to providing financial security, employment can contribute significantly to the physical and mental well-being of people with MS, providing a source of support and social interaction, and a sense of identity and purpose.”
3. Only older adults develop MS
Actually, most people with MS experience their first symptoms between the ages of 20 and 40 years.
While it can appear at any age, developing MS after the age of 50 is considered relatively rare.
However, as the authors of one study explain, distinguishing late-onset MS from other conditions associated with advancing age can be challenging, so the condition may be more common than some estimates suggest.
4. People with MS should not exercise
This is untrue. Exercise can help with symptoms and improve balance and strength.
This myth is pervasive. As the researchers behind some recommendations note, people with MS often start doing less physical activity because they are concerned that it might make their symptoms worse. But the team concludes:
“Exercise should be considered as a safe and effective means of rehabilitation in MS patients. Existing evidence shows that a supervised and individualized exercise program may improve fitness, functional capacity, and quality of life, as well as modifiable impairments in MS patients.”
Last year, the National Multiple Sclerosis Society, in collaboration with a team of experts, published a comprehensive guide to physical activity for people with MS. Among other recommendations, they write:
“Healthcare providers should encourage [at least] 150 minutes each week of exercise and/or [at least] 150 minutes each week of lifestyle physical activity. […] Progress toward these targets should be gradual, based on the person’s abilities, preferences, and safety.”
It is important to speak with a doctor before starting a new exercise regimen.
5. If my symptoms are minor, I don’t need medication
Currently, experts say that even if MS symptoms are relatively minor, it is important to get treatment.
During the early phases of the condition, its symptoms may not cause too many problems, but early treatment and long-term follow-up can potentially slow the progression of the disease.
For instance, a study published in 2016 investigated the effects of beginning MS treatment early. The authors concluded that “Early treatment initiation was associated with a better clinical outcome.”
6. People with MS should not get pregnant
Another common myth is that MS can hamper efforts to become pregnant and cause issues during pregnancy. This is not true. The Multiple Sclerosis Trust explain:
“A pregnancy is not automatically high risk just because the mother has MS. […] If you have MS, you are no more likely to experience a miscarriage or birth [abnormalities] in your baby than a woman who does not have MS.”
People with relapsing-remitting MS are less likely to experience a relapse during pregnancy than they would ordinarily. The risk of relapse increases again in the 6 months after giving birth.
In 2019, the Association of British Neurologists published a consensus on guidelines for pregnancy in people with MS, from prepregnancy counseling to postpartum advice.
They acknowledge that “Having MS does not affect fertility or risk of miscarriage,” and that “Pregnancy does not increase the risk of worsening long-term disability.”
The authors also recommend that people with MS “should not defer disease-modifying drug treatment because they wish to have children in the future.”
7. I have MS, so my children will, too
While there is a genetic component to MS, it does not pass directly from parent to child in a predictable way.
Studies have shown that if one identical twin develops MS, there is a 20–40% chance that the other twin will, too. In nonidentical twins, the risk is 3–5%. This shows that although genes are involved, there is more to the story.
So far, scientists have identified more than 200 gene regions that contribute to MS susceptibility.
According to the MS Society, 1 in 67 children who have a parent with MS develop the condition. This is compared with a roughly 1 in 500 risk for children whose parents do not have MS.
So, although the risk does increase, inheriting MS is in no way a foregone conclusion.
8. People with MS must avoid all sources of stress and anxiety
It is true that stressful life events can worsen the symptoms of MS for some people. It is also true that people with MS are more likely to experience anxiety.
However, it is impossible to avoid stress and anxiety altogether.
The MS Society recommend finding ways to manage stress more effectively. And as the authors of a brochure produced by the National Multiple Sclerosis Society note:
“Stress can’t be — and shouldn’t be — totally avoided. The challenge is to learn to reduce its intensity and use it to work for, not against, us.”
A similar myth is that stressful life events might increase the risk of developing MS in the first place. There is no evidence that this is true.
9. MS is always fatal
Although MS is a lifelong condition, it is not a fatal one. According to one study, having MS reduces a person’s lifespan by around 7 years.
The same study found that “Survival was shortest in the earliest birth cohort for both populations.” From this, they conclude that the average lifespan of people with MS may be slowly increasing.
As scientists keep investigating this disease and researching and developing new treatments, MS is likely to have an increasingly reduced effect on a person’s lifespan.
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