World MS Day: 10 Things Everyone Should Know About MS

Today is World MS Day, and this year's theme is “connections” which feels all the more important during these trying times. Whether we're physically together or apart, World MS Day is an opportunity for the entire world to come together and advocate for the MS community. In order to further awareness and deepen understanding of everyday life with MS, we've compiled this list of the top 10 things everyone should know about MS.

10 things everyone should know about MS

1. We don’t have a cure

MS is a lifelong, incurable disease that can affect people in a myriad of ways, varying in intensity from mild to severely disabling. Fortunately, there are a growing number of medical treatments and management approaches to affect the course of the disease and to lessen the impact of symptoms on daily life.

2. Around 1 million Americans are living with MS!

A new study published last year significantly updated previous data on the prevalence of MS in the United States. Originally thought to be between 300,000-400,000 individuals, experts now believe the number of adults living with MS in the United States to be between 750,000 and 1 million. MS is globally most common in North America and parts of Western Europe. The highest incidence is found in Canada, Ireland, Sweden, and Denmark with a rate of 150-300 cases per 100,000 people. (Check out this article to see comprehensive graphics of global prevalence.)

3. MS can be an invisible illness or a very glaring condition

In a poll of over 1,800 MS community members, 58% of respondents said they frequently hear the line, “But you do not look sick...” This relates to the fact that many symptoms of MS, whether emotional, physical, or cognitive, are not visible on the outside. Such misunderstanding can be one of the most frustrating aspects of MS as 84% of community respondents report people minimizing their MS because they couldn’t see it. However, this isn’t always the case. Sometimes MS can inflict severe disability, especially for those with primary-progressive MS (PPMS). Patients with PPMS typically have greater difficulties with motor function, including walking, and are more likely to require help with daily activities.

4. There’s normal fatigue, and then there’s what we deal with...

Of the many symptoms associated with MS, fatigue is the most common and potentially most disabling symptom, affecting between 75% and 90% of people who have MS. When asked, about half of respondents said that fatigue is the one symptom of MS that has the greatest impact on their daily life. It is also one of the symptoms most responsible for people’s decision to leave the workforce. In addition to typical causes of fatigue (sleep disturbance, muscle weakness, etc.) people with MS experience a unique form of fatigue, sometimes referred to as lassitude or MS-related fatigue. This MS-related fatigue has an unknown cause, but researchers are working to create a better understanding of how this form of fatigue is distinctive from others.

5. MS can really mess with your noodle

Up to two-thirds of people with MS will experience some sort of cognitive impairment. Cognitive dysfunction (also known within the community as “cog fog”) typically progresses slowly and is generally mild-to-moderate though severe impairment affects a small group of people with MS. Cognitive functions impacted by MS include attention and concentration, learning and memory, executive functions such as planning and organizing information, and expression. Learn more details about signs of cognitive problems, their evaluation, and treatments.

6. Some MS symptoms are just plain WEIRD

The MS community has described a plethora of unexpected symptoms that can only be described with the adjective, weird. One is an uncontrollable itching sensation that feels like bugs are crawling all over you. Another is acute sensitivity to sound that can result in involuntary muscle contraction, like when you’re falling asleep on a plane and you suddenly “jump” awake, called stimulus-sensitive myoclonus. A third symptom is one known commonly through the community as "the MS hug” – a painful sensation around the torso that can range in severity from uncomfortable pressure to intensely painful squeezing and crushing.

7. There is no simple way to diagnose MS

No single set of symptoms or lab test can independently identify MS. Instead, doctors must use multiple tools such as medical history, a thorough neurological exam, and MRIs to reach a diagnosis. This conclusion is considered a clinical diagnosis, meaning the physician relies less on specific test results, but more on symptoms reported by the patient in context of medical history and signs detected during the neurological exam.

8. We’ve been social distancing since before it was “cool”

Obviously, “cool” here is a tongue in cheek reference to the widespread response to the COVID-19 pandemic, but unfortunately this reality has long been a typical way of life for many with MS. Many medications for MS leave those treated immunocompromised and thus simple illness can become severe – as a result people with MS are often forced to live an isolated life. One of our advocates shares his sentiment on the topic via his poignantly titled article, “Welcome to Our World.”

9. There are a lot of myths about MS

Many misconceptions about MS have persisted over time despite the growth of community communication and awareness efforts. Here are some of the top ones:

• Myth: “MS is a fatal or terminal disease” – the lifespan of a person with MS is just as long as that of someone without the illness. Though there are some cases of MS that have a rapidly progressive and malignant course, leading to early death, these are rare.
• Myth: “There is no effective treatment for MS” – although there is currently no cure for MS, there are effective treatments that can help some people function at high levels most of the time.
• Myth: “You shouldn’t have children if you have MS” – research has shown that people with the disease have healthy children and function just as well as parents without MS. Pregnancy and childbirth do not make MS worse. In fact, some women find that pregnancy actually improves their symptoms.
• Myth: “Everyone with MS eventually winds up in a wheelchair” – about two-thirds of people with MS only have mild-to-moderate disability and remain ambulatory. Some people may eventually find balance support from a walking aid such as a cane, but the idea that everyone with MS is destined to be wheelchair-bound is false.

10. The MS community is a diverse, invested, and supportive group of patients, caregivers, and loved ones

Though an MS diagnosis is certainly scary, those with the illness are not alone. Multiplesclerosis.net is home to dozens of committed advocates and tens of thousands of members, each contributing their unique voice and narrative to the community. Every MS story is different, and we believe each one is increasingly defined less by the disease itself and more by the individual and their courageous fight against it.