Focusing on multiple sclerosis (MS) – improving awareness of the invisible symptoms

30 May is World MS Day – a day on which the global MS community unites to raise awareness for everyone affected by the disease. The 2019 campaign is called ‘My Invisible MS’ and the theme is visibility, highlighting the fact that even though someone with MS might look well, they may be experiencing a range of unseen, debilitating symptoms.

MS affects 2.5 million people worldwide and remains the second most common cause of significant neurological disability (after road traffic accidents) in people under the age of 40 [1]. Globally, there are also undoubtedly many people with MS who remain undiagnosed and many others, such as family members and caregivers, who are indirectly affected by the disease [2].

What is MS?

MS is a chronic, immune-mediated inflammatory condition of the central nervous system (CNS) that can affect the brain, brainstem and spinal cord. The inflammatory process causes areas of demyelination (damage to the fatty, insulating covers of nerve cells), sclerosis (scarring) and secondary nerve cell damage throughout the CNS, resulting in physical, mental and psychiatric problems. The trigger for this autoimmune reaction is unknown, but is likely to be the cumulative effect of various genetic and environmental risk factors [3].

The majority of patients have initial reversible episodes of neurological dysfunction (relapsing–remitting MS [RRMS]), but over time as nerves sustain further damage, individuals can develop permanent symptoms with progressive disability (secondary progressive MS [SPMS]). Approximately 10%–15% of patients have progressive disease (primary progressive MS [PPMS]) from the outset [3].

How common is it?

  • 100,000 people in the UK are living with MS
  • MS affects three times as many women as men
  • It is more common in Caucasians of Northern European ancestry
  • There is a possible link with reduced vitamin D production
  • Having a parent or sibling with MS results in a 1%–3% risk of developing the disease
  • Having an identical twin with MS raises the risk to 30%
  • People with type 1 diabetes, inflammatory bowel disease or thyroid disease are at a slightly increased risk [3]

What are the symptoms?

As lesions can develop throughout the CNS, MS is unpredictable in its disease course and there can be a wide range of symptoms. Many of these symptoms will be invisible to others, and no two patients will experience the disease in the same way. A study in 2008 concluded that the invisible symptoms may, in some cases, be more troubling for sufferers than the visible ones [4]:

Visible symptoms

  • Coordination and balance problems (resulting in a need for assistive devices)
  • Speech difficulties

Invisible symptoms

  • Sight problems
  • Pain
  • Fatigue
  • Dizziness
  • Muscle spasms
  • Heat sensitivity
  • Anxiety and depression
  • Swallowing issues
  • Brain fog
  • Bladder and bowel problems

Treatment options and future hopes

The management of MS can be divided into symptomatic relief and disease control. Options for providing symptomatic relief include steroids for severe relapses, physiotherapy, and complementary and alternative medicines, while disease control can encompass disease-modifying treatments (DMTs) and approaches such as haematopoietic stem cell transplantation.

Although there is currently no cure for MS, DMTs can successfully reduce the number and severity of relapses, delay the onset of disability, and slow the speed at which the disease progresses [5]. In 2015, a scientific consensus was reached that people with RRMS should start on DMT as early as possible after diagnosis, as the progression of the disease is thought to be continuous even during periods of remission [6].

MS research continues to be extremely active and the momentum is building to stop MS from affecting people’s lives for good. In the meantime, delaying disease progression and raising awareness of the unseen impact of the disease remain key priorities for the MS community.

 

References

  1. Harrison DM. In the clinic. Multiple sclerosis. Ann Intern Med 2014; 160 (7): ITC4-1.
  2. WorldMSDay. My Invisible MS. Available at: https://worldmsday.org/. Accessed May 2019.
  3. National Institute for Health and Care Excellence. Clinical knowledge summaries – multiple sclerosis. Available at: https://cks.nice.org.uk/multiple-sclerosis. Accessed May 2019.
  4. White CP, White MB and Russell CS. Invisible and visible symptoms of multiple sclerosis: Which are more predictive of health distress? J Neurosci Nurs 2008; 40 (2): 85–95, 102.
  5. National Multiple Sclerosis Society. Available at: www.nationalmssociety.org. Accessed May 2019.
  6. MS Society. Early treatment. Available at: https://www.mssociety.org.uk/about-ms/treatments-and-therapies/disease-modifying-therapies/early-treatment#. Accessed May 2019.