MS Awareness Week 2020: Shedding light on the ‘hidden’ symptoms

MS Awareness Week

 

In the UK, Multiple Sclerosis (MS) Awareness Week 2020 takes place from 20 to 26 April and will offer the opportunity to place this debilitating and often misunderstood disease under the spotlight.This year, the focus of MS Awareness Week is ‘mental health and MS’ to encourage patients and their loved ones to speak up and seek help [1]. To support this initiative, this article looks at the varied and ‘hidden’ symptoms of MS and gives an insight into the mental health issues that many patients with this disease face on a daily basis.

The pathophysiology of MS

MS is a complex neurodegenerative disease of the central nervous system (CNS) that typically manifests before the age of 30 and confers a lifelong disability [2]. MS is thought to be classified as an autoimmune disease, and is facilitated by the crossing of autoreactive lymphocytes over the blood–brain barrier where they induce local inflammation of the CNS [3]. As the name of the disease suggests, this inflammation leads to the formation of multiple inflammatory plaques (scleroses) in the CNS, which results in the destruction of myelin – a protective coating that surrounds nerve cells throughout the CNS and enables these cells to propagate electrical impulses. Destruction of myelin therefore disrupts the conductive properties of these nerve cells and results in axonal degeneration in the spinal cord and the grey and white matter of the brain [3]. Although the aetiology of MS is currently unknown, several theories suggest that genetic and environmental factors play causative roles [2].

The common symptoms of MS

Because formation of inflammatory plaques can occur anywhere within the CNS, the neurological symptoms of MS are widely heterogeneous and unpredictable; each patient with MS may have vastly distinct symptoms that can change throughout their lifetime [4]. Despite the extensive array of symptoms, many are common among patients with MS, including fatigue, numbness, weakness, dizziness, difficulty walking, spasticity, visual problems, and bladder and bowel problems [4]. These symptoms can drastically affect the daily functioning of patients with MS, which, in turn, can also affect family life, as these patients are often dependent on care from friends and family.

Alongside the sensory and motor symptoms, emotional and cognitive changes frequently occur in patients with MS. Cognitive decline is common in MS, which can result in impaired memory and information processing and also emotional and personality changes through the neuropathological process. Roughly 95% of patients with MS experience neuropsychiatric symptoms to some degree, and these often overlap with reactive psychological manifestations, the most common being depression (79%), agitation (40%) and anxiety (37%) [5]. Patients with MS are more than seven times more likely to have suicidal intent and are three to four times more likely to experience psychosis compared with the general population [5]. Many patients feel that the psychological consequences of living with MS are overlooked by standard support programmes and that more specific support should be offered [6].

Shedding light on the ‘hidden’ symptoms

Although being confined to a wheelchair or using a walking aid are obvious signs of disability, many of the aforementioned symptoms of MS are effectively invisible to those around someone with the disease. At first glance, it may not be possible to know that someone is suffering from MS, and patients with the disease may struggle in a variety of ways that those without it may not even realise. Fatigue, numbness, weakness and dizziness are not symptoms that are superficially obvious, yet such symptoms are all-encompassing for someone with MS and can dramatically affect how they function in everyday life [4]. Other invisible symptoms include bladder and bowel problems, which can lead to patients with MS being unwilling to leave their homes for fear of an embarrassing accident [4]. Additionally, the plethora of neuropsychiatric symptoms that many people with MS face, including depression and anxiety, are hidden from those around them and are rarely thought of as symptoms of MS [5]. The lack of knowledge around these symptoms of MS can increase feelings of isolation and anxiety, exacerbating the mental health conditions experienced by many patients. It is for this reason that the campaign aims to spread awareness of the varied and ‘hidden’ symptoms of MS and give an insight into the mental health issues that many patients with this disease face.

Importance of the awareness campaign

It is estimated that over 130,000 people live with MS in the UK, and that roughly 7,000 people are diagnosed annually [7]. Although there are several disease-modifying drugs for the management of the disease, no curative treatment currently exists [8]. This highlights the importance of raising awareness of MS, alongside the need for research funding that could lead to a cure being developed in the future. By learning about the varied and often ‘hidden’ symptoms of MS, as outlined in this article, you will be able to better understand the struggles that sufferers of MS face on a daily basis. To do your part, we encourage you to impart this knowledge to others to raise the profile of the disease during this week-long awareness campaign. To quote the MS Society, “Our ultimate goal is to find a cure. Until then, we’re working to make sure no one has to face MS alone. Everything we do is guided by people with MS. Because together, we’re stronger” [9].

To find out how you can get involved, follow the links below:

https://www.mssociety.org.uk/get-involved/campaign-with-us

https://www.mssociety.org.uk/get-involved/donate

https://www.mssociety.org.uk/get-involved/fundraise

#MSWeek #ThisIsMS #MSin5Words

 

References

  1. MS Society. MS awareness week 2020. Available at: https://www.mssociety.org.uk/get-involved/ms-awareness-week. Accessed April 2020.
  2. Wingerchuk DM, Lucchinetti CF and Noseworthy JH. Multiple sclerosis: Current pathophysiological concepts. Lab Invest 2001; 81 (3): 263–281.
  3. Huang WJ, Chen WW and Zhang X. Multiple sclerosis: Pathology, diagnosis and treatments. Exp Ther Med 2017; 13 (6): 3163–3166.
  4. National Multiple Sclerosis Society. MS symptoms. Available at: https://www.nationalmssociety.org/Symptoms-Diagnosis/MS-Symptoms. Accessed April 2020.
  5. Haussleiter IS, Brüne M and Juckel G. Psychopathology in multiple sclerosis: Diagnosis, prevalence and treatment. Ther Adv Neurol Disord 2009; 2 (1): 13–29.
  6. MS Society. How research is tackling the emotional impact of MS. Available at: https://www.mssociety.org.uk/research/latest-research/latest-research-news-and-blogs/how-research-is-tackling-the-emotional-impact-of-ms. Accessed April 2020.
  7. MS Society. MS in the UK. Available at: https://www.mssociety.org.uk/what-we-do/our-work/our-evidence/ms-in-the-uk. Accessed April 2020.
  8. Cerqueira JJ, Compston DAS, Geraldes R et al. Time matters in multiple sclerosis: Can early treatment and long-term follow-up ensure everyone benefits from the latest advances in multiple sclerosis? J Neurol Neurosurg Psychiatry 2018; 89 (8): 844–850.
  9. MS Society. Our work. Available at: https://www.mssociety.org.uk/what-we-do/our-work. Accessed April 2020.