OVERVIEW
Symptoms can vary from person to person. However, among the first signs of MS are visual disturbances or optic neuritis, bladder problems, spasms or tremors. Other indicators of the disease are numbness, loss of balance, chronic fatigue, and pain. MS patients report cognitive impairment causing memory issues, or slower rate of processing information (Panou, T. et al, 2012).
Each patient is unique, therefore the manner and the extent of symptoms will vary among individuals, as will the subsequent effect upon their day to day lives. Below are some of the most common problems MS patients may incur, as a result of living with the disease (Definition of MS, 2022)
NUMBNESS/TINGLING This may be one of the first signs of MS, and sensations are often in the face, arms and legs.
VISION PROBLEMS Otherwise known as Optic Neuritis. You may experience problems with normal eye movements.
FATIGUE Extreme tiredness and fatigue are experienced in almost 80% of MS patients. This can be incredibly disabling and impact of your quality of life. For example, attending work, or social functions may become more difficult.
MUSCLE SPASMS Feelings of stiffness commonly occur in the legs, but it can happen to any part of your body.
MOBILITY ISSUES Fatigue and cognitive impairments may render you immobile, you may even experience a loss of balance.
DYSESTHESIA Otherwise known as the MS hug. Patients describe a feeling of being squeezed due to nerve damage. Sensations of burning, itching and tingling are often felt around the torso.
BLADDER PROBLEMS. Present in around 80% of MS patients. Loss of bladder control can often be managed by monitoring your fluid intake.
VERTIGO A feeling of dizziness and loss of balance.
BOWEL PROBLEMS Loss of control over bowel movements, or constipation.
SEXUAL PROBLEMS This can be brought about by damage to the nervous system, and can also be a response to certain medications. Other symptoms such as fatigue and loss of mobility can also be a factor.
PAIN Pain that requires clinical attention is common in around 55% of patients, and is an ongoing feature of living with MS.
COGNITIVE CHANGES. You may incur changes in your ability to learn and remember information. You may also have difficulty understanding your surroundings and become easily disoriented.
EMOTIONAL CHANGES Irritability, low moods, and anxiety are common side effects of the emotional experiences of patients. These may also be worsened by the effects of certain medications.
DEPRESSION This is a common symptom in over 50% of patients, and can often go undiagnosed due to the other mentally challenging aspects of living with the disease.
SPEECH PROBLEMS Slurring or stuttering of speech is a symptom experienced in around 35 -40% of patients, and tends to be more common in those with secondary progressive MS.
LOSS OF TASTE Up to a quarter of patients report a loss of taste.
SEIZURES These are involuntary movements caused by the nerve damage to the brain and spinal cord. These may also present as an inability to speak for a short time. In the worst cases it can result in a loss of consciousness.
SWALLOWING ISSUES Nerve damage to the throat can cause difficulty swallowing, otherwise known as dysphagia.
BREATHING PROBLEMS Nerve damage to the muscles controlling the chest can result in breathlessness, and difficulty speaking.
HEARING PROBLEMS Complete loss of hearing is not uncommon, and you may experience tinnitus, or an increased sensitivity to noise.
(Definition of MS, 2022).
If you are experiencing any of the symptoms outlined here, you may feel frightened and unsure about what to do. It is always worth visiting your GP to determine the potential cause. They may be able to identify a pattern in the occurrence of symptoms, and detect early indicators of the disease (Barin, L. et al. 2019).
It is common in the early stages of the disease to experience symptoms that are very mild. They can often remit without treatment, so can easily be mistaken for other things. For example, you may be tempted to put extreme fatigue, or a temporary deficit in memory function down to stressful life events. However, it is important to discuss any concerning or uncomfortable symptoms with a medical practitioner as soon as possible, as it has been shown that an early diagnosis can reduce exacerbation of the disease (Eccles, A. 2019)
A growing body of research suggests that there exists a period of up to 5-10 years prior to an official MS. diagnosis, in which patients experience a wide variety of symptoms, such as, urinary problems, abnormal. sensations, visual disturbances, and dizziness (Makhani, N. et al, 2021).
This is thought to be the prodromal phase that predates the disease. However, research by Dr Bernard Hemmer and his team of neurologists in Germany, suggests that the earlier the disease is recognized the sooner it can be treated. His findings showed that patients with MS visited the GP and were admitted to hospital significantly more times than a control group of healthy patients in the years before a diagnosis was determined (Gasperi, C. et al, 2021).
The video below details research by Dr Hemmer, describing how subtle symptoms experienced by patients in the early stages of the disease spontaneously remit. Therefore, many do not attend follow up appointments. GP's rely on the appearance of symptoms, and a pattern of occurrence to identify the disease. This highlights the importance of liaising with health care practitioner's so that early signs of MS do not get overlooked (Today's Scientology, 2021).
TIMELY DIAGNOSIS
There are currently no physical tests, or laboratory findings that can determine if you have a definitive diagnosis of MS (Hunter, S.F. 2016). Instead clinicians follow certain guidelines that are set out by the MacDonald criteria 2017 (Wexler, M. 2022). These include finding evidence of damage in at least two separate areas of the brain, spinal cord and optic nerves that make up the central nervous system (CNS) (Hunter, S.F. 2016).
Further, they must be able to identify that the damage emerged at two different times. However, a useful way to rule out other diagnoses is by having a blood test. This can help to eliminate the possibility of conditions such as acquired immune deficiency syndrome (AIDS), diabetes, or rare hereditary immune deficiency.
Your GP will conduct a careful medical history and arrange for a neurological exam. Other tests may include magnetic resonance imaging (MRI), or spinal fluid analysis (Eccles, A, 2019).
Neil describes finding relief after his diagnosis. He could finally understand the reasons for the variety of symptoms he had been experiencing. Here he describes a poignant moment when he began to feel hope for the future that the diagnosis may not have to mean complete disability (MS Teamworks, 2017).
If you have just received a diagnosis of MS you may feel a mixture of things. You may be feeling shocked and overwhelmed. You may also be feeling some relief by understanding the reason for your symptoms. Each person is unique and will respond to a diagnosis differently (Multiple Sclerosis Trust, 2019).
Adjusting to a new diagnosis of MS can be a traumatic experience. With no known cure for the disease, and a lack of predictability regarding symptom relapses, it naturally causes a great deal of distress for patients. Many report feeling overwhelmed with sadness, frustration and anger at the anticipation and uncertainty of their condition (NHS England, 2023). The grief over the changes they are faced with can affect mood & cognitive processes, leading to dysfunctional thoughts and behaviour (Lampit, A. et al, 2019).
IMPACT ON MENTAL HEALTH
One study examining patients 8 months following diagnosis, showed high levels of stress and anxiety among patients and their partners. 34% of patients and 40% of their partners had medically relevant levels of anxiety, with similarly high scores of distress (Janssens, A. et al, 2003). The highest levels were among patients with more physical limitations, and higher disability.
Fortunately, treatments have progressed since the time of these studies and new disease modifying therapies are available to help patients manage their symptoms. These are described in the treatment for MS section (Ziemssen, T. et al, 2023).
QUALITY OF LIFE Quality of life for people with MS continues to be severely impacted by the disease, and patients report how side effects of disease mediating medicines, can increase the likelihood of mood disorders (Ratajska, A. et al 2020). Also, it is important to remember that 'quality of life' is not universal, and that each patient will suffer different forms of grief and loss associated with the varying levels of disability. It may also be the case that not all patients will have the same concerns regarding employment or familial support, and that levels of independence are also diverse.
This demonstrates that despite advances in treatment, there is still a need for tailored psychological interventions for patients and their partners following MS diagnosis. Therefore, it is important to disclose any personal circumstances that may increase the risk of you becoming mentally unwell. (Kiropoulos, L. et al. 2020).
COPING WITH YOUR DIAGNOSIS
The concept of coping with a diagnosis is will change over time, and be associated with many different factors. Positive outcomes for patients have been found to be related firstly to, acceptance of the disease, and maintaining emotional regulation. Secondly, awareness of the condition, and adapting to treatment, with physical and psychological side effects (Briones-Buixassa, L. et al, 2015).
These outcomes will depend upon your individual situation. For example, if you do not have a satisfactory support network such as family and friends, or lack adequate access to local healthcare facilities, adapting to an MS diagnosis will naturally be more challenging (Kiropoulos, L. et al. 2020). These factors can be addressed by talking to your health care professional, and seeking help via local support groups (see additional resources).
THE IMPORTANCE OF SOCIAL SUPPORT
Social support for MS patients has been recognised as a significant factor in predicting positive mental health outcomes (Ratajska, A. et al, 2020). A study published in 2020 in the Journal of Neuroscience discovered that MS patients and their carers who have their fears validated in social support groups, can profoundly improve both mental and physical health (Maguire, R, 2020). Conversely, avoidance of social situations, and an inability to continue employment can leave patients feeling isolated and lonely. Feeling separated from others has been shown to lead to an increased risk of depression. This can lead to a reduced level of mobility and increase the risk of extreme fatigue.
KEY FACTORS FOR SOCIAL SUPPORT
According to a large scale cross sectional study via the UK MS register, factors integral to social support are;
Love and affectionate care
Positive engagements with friends and family
Material assistance
Emotional support, such as guidance, advice and empathy. (Jones, K. et al, 2012).
Additionally, spiritual beliefs have been found to be associated with well-being. Believing in God can help individuals make sense of their illness, and find empowerment. MS patients with relapsing remitting symptoms describe how their religious practices ameliorated psychological challenges and feelings of uncertainty, and increased their quality of life (Papa, A. et al, 2021).
IMPORTANCE OF EMOTIONAL SUPPORT
Alongside the material support to aid with disability, or various guidance from family and friends, patients desire emotional support. In fact, research has found that empathy and compassion is more important to MS patients than other forms of care (NHS England, 2023). A recent survey by the MS society looked at the emotional issues in over 3000 patients and it was determined that over 50% of patients felt that their emotional needs were not being met (What is MS, 2022). This can lead to further feelings of being separated and misunderstood. A lack of emotional support has been found to increase the risk of self harm and developing mental illness.
SUPPORT AVAILIABLE
If you are isolated and vulnerable, it is important to talk to your GP, who can find suitable interventions such as counselling sessions, or put you in touch with local charities who specialise their support in living with MS (National Multiple Sclerosis Society, 2022).
You can contact the care support team on 0300 5008084 between Monday-Friday (9am-5pm), or email supportercare@mssociety.org.uk
Alternatively, see additional resources where you can explore local support groups,many of which operate online. Therefore, if you are experiencing painful relapses, you can still find adequate social integration to make a difference and help you cope.