Mental Health in Multiple Sclerosis: An Unnerving Aspect of the Disease

Published on: December 11, 2024

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Many symptoms of MS are visible to the outside world, such as movement or speech problems, but there are also invisible symptoms (unseen by others) that significantly impact the lives of those living with the disease.
One of the unseen elements of MS is mental health. Symptoms such as fatigue, mood swings, fear, stress, anxiety, and depression are common among people living with MS.1,2 Such experiences can disrupt a person’s sense of self and their ability to connect with others. Too often, these symptoms go undiagnosed and under-reported. That needs to change.

Multiple sclerosis literally means “many scars,” which most commonly refers to the visible white patches that appear on MRI scans and show chronic disease in the brain or spinal cord.3

The impact on mental health is one of the many “unseen scars” for those living with MS. It’s important to address the ways multiple sclerosis takes a tremendous toll on the mental well-being of people impacted by the disease.

Sanofi’s Global Medical Head of Neurology, Luis Felipe Orozco, MD, PhD, sat down with Amanda Montague, ED.M., the Chief Mission Officer at the Multiple Sclerosis Association of America (MSAA) to discuss this important and often overlooked aspect of MS.

Historically, there's been much focus placed on the mobility issues of MS – those signs of disease that can be seen with the eyes. However, lesser attention has been placed on the unseen aspects, such as cognition, depression or fatigue, which can be undertreated.
Amanda Montague, ED.M

Amanda Montague, ED.M

Chief Mission Officer, Multiple Sclerosis Association of America (MSAA)

A concerted effort is needed from healthcare providers to educate the community about mental health symptoms such as stress, fear, anxiety, and depression in MS and how to address them. From the very beginning of diagnosis, people living with MS need to know that just like the physical symptoms, the cognitive and mental symptoms can also progress and worsen over time. As such, mental health should be part of the earliest conversations in the clinical plan.

A psychiatrist represents a critically important member of the MS care team. These medical experts can assess mental function and introduce effective strategies and treatments for helping people cope with stress, anxiety, depression and other mental-health related conditions.
Luis Felipe Orozco, MD, PhD

Luis Felipe Orozco, MD, PhD

Sanofi’s Global Medical Head of Neurology

Did You Know?

Cognitive Function

Cognition relates to the ability to think, reason or remember. It is a main reason why many people with MS are unable to continue working. This concern brings out a lot of fear for people living with MS. (4,5)

The Difficulty of the Unknown

One of the most unsettling components of MS is not knowing how the disease will impact the future. For most people living with MS, the symptoms they experience from their disease will likely change over time, but MS affects every person differently.

Some may experience mild symptoms, while others may experience worsening physical and cognitive disabilities that greatly impact daily life. It is this unpredictable nature of MS that makes living with the disease unnerving.

Facing the unknown can lead to a wide range of emotions and can even progress to a mental disorder. Sadness, anxiety, anger, irritation, stress, and fear are common reactions.1 Disconcerting questions start to arise and weigh heavily on the minds of people living with MS.

Animated graphic depicting questions asked by people living with MS

MS Can Directly Cause Mental Health Decline

While MS indirectly can lead to depression, anxiety, and other mental health conditions, research shows there may also be a direct link. Damage to the brain can be measured by the number of MS lesions or white patches seen on MRI scans. These brain scans are one of the first steps doctors take to diagnose MS and assess the extent of damage. The symptoms a person experiences with MS depend on the area of the brain where the damage occurs. This explains why the symptoms of MS can vary so greatly from person to person.

If someone with MS has damage in the frontal part of the brain, which controls executive functions and emotional regulation, this can impact the way a person feels or reacts, regardless of their personality. It can explain how one might experience symptoms of depression and cognitive dysfunction or brain fog, that were not present before the onset of MS.9, 10, 11

In other words, the disease itself can be the direct cause of mental health issues for some people.

Inside the Minds of MS

The hidden scars of MS can negatively impact a person’s overall well-being. Too often, people living with the disease may not recognize the subtle changes taking place, but those close to them do, underscoring the vital role of care partners and family members.

“Somebody living with MS might not notice the cognitive problems or changes in emotions they are experiencing, but care partners are able to pick up on them,” says Montague. “Care partners have amazing insights about what is really going on. They are the ones interacting with the person every day, whereas neurologists often see their patients only once every six months. It’s important to think about how care partners are engaged and part of the clinical discussion as they can help bridge the gap between appointments.”

Rollercoaster – that's the best way to describe our experience with MS. We’ve gone through lots of changes. It’s been tough. At times, Roger was very depressed, but I noticed a turning point in his attitude when we began finding new things we can still do together like hiking and other outdoor activities. Because of this, he has a more positive outlook!
Judy

Judy

Wife, mother, retired art teacher, and caregiver to husband Roger, who is living with MS

While MS presents challenges, it’s important to support and prioritize the mental health of everyone impacted by the disease, including care partners and family members.  Recognizing and managing the emotional aspects of MS – for everyone impacted – is just as important as managing the disease itself.

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Reference

  1. National MS Society. Common Emotional Changes in Multiple Sclerosis. Accessed October 28,2024.
  2. National MS Society. Stress and MS. Accessed October 28, 2024.
  3. Institute of Medicine (US) Committee on Multiple Sclerosis: Current Status and Strategies for the Future; Joy JE, Johnston RB Jr., editors. Multiple Sclerosis: Current Status and Strategies for the Future. Washington (DC): National Academies Press (US); 2001. 2, Clinical and Biological Features. Available from: https://www.ncbi.nlm.nih.gov/books/NBK222386/
  4. MS International Federation. Emotional and cognitive changes. Accessed on October 29, 2024.
  5. MS Society. Cognition problems in MS. Accessed on October 29, 2024.
  6. MS Trust. Depression. Accessed on October 29, 2024.
  7. MS Society. Anxiety, stress and MS. Accessed on October 29, 2024.
  8. Johns Hopkins Medicine. Health. Accessed on October 29, 2024.
  9. National MS Society. Can MS Cause Mental Health Issues?. Accessed October 28, 2024.
  10. Multiple Sclerosis Association of America. Depression. Accessed on October 29, 2024.
  11. Patten SB, Marrie RA, Carta MG. Depression in multiple sclerosis. Int Rev Psychiatry 2017;29:463–472.
MAT-GLB-2407160-v1.0-12/2024 Page Updated: December 2024