Living with the ‘mystery disease’

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Multiple Sclerosis (MS) is an inflammatory, immune mediated primary demyelinating disease, which means it attacks neurons specific to the central nervous system. It is characterised clinically by episodes of focal disorder of the optic nerves, spinal cord, brainstem and cerebellum, which remit to a varying extent and recur over a period of many years.

The clinical manifestations are varied and are determined by the location, and extent, of the demyelinative foci (plaques). Because plaques manifest anywhere in the central nervous system, symptoms vary from patient to patient, and from one relapse to the next in the same patient.

MS is most commonly diagnosed in patients in the 20 to 40 age group with a ratio of 3:1 between women and men. Genetic factors are indicated but there is now more evidence of occurrence among people with ancestry further from the equator.

MS is the most common chronic neurological disability amongst young adults, and most often leads to progressive physical and cognitive disability over time.

Relapsing and remitting MS is the most commonly first identified form of the disease. This is where relapses occur randomly over a period of the first three to four years of diagnosis. Here recovery varies in each remittance and from one patient to the next.

Chronic secondary and chronic primary progressive MS is where the attacks occur more often and lead to the decline of neurological function over progressively reduced periods of time. This acceleration in occurrence leads to disability increasing at a faster pace and recovery from symptoms seldom occurring.

Chronic forms are seldom the first identified level and often follow a period of relapsing and remitting state. The least invasive form is benign MS where patients suffer few relapses resulting in little or no disability.

Mystery disease

MS is often referred to as a mystery disease as there is no clear or regular first symptom. The first clinical symptoms are often increasing chronic fatigue and general weakness, optic neurosis, impaired or double vision or eye pain.

The patients also often complain of hand eye co-ordination and gait disturbances. As the disease progresses, loss of sphincter control, blindness, paralysis, and dementia may develop. Other typical symptoms are spasticity and other pyramidal signs, tingling, numbness, lack of feeling and sensation in hands, fingers and feet.

Atypical symptoms include language impairment (aphasia) and vision problems, extrapyramidal movement disturbances, and severe muscle wasting or fasciculation.

Over time, cognitive ability declines markedly and mental problems such as poor short term memory, bad or no decision-making ability, and difficulty prioritising. Social cognitive issues, including poor conversation, lack of concentration, and reduced self confidence are also sometimes noted.

Chronic MS fatigue differs from normal fatigue, generally leaving the patient feeling unable to do anything at all. Patients experience both mental and physical fatigue at the same time. The fatigue is drastically exasperated by heat. MS fatigue makes other symptoms seem much worse. All of this adds up to drastic depression and mood swings, leading to higher than the norm divorce and suicide rates. MS sufferers are very difficult to live with and care for.

Diagnosis criteria

In diagnosis, it is critical that all other autoimmune disorders and infectious disease are ruled out. It is also essential that two or more relapses occur at the same time, or within a limited time period.

Firstly, exclusion of all other diseases or viruses giving similar clinical symptoms must be ruled out, and the sensitivity of MR imaging in detecting MS is 84%. Imaging findings vary with disease activity, although clinical correlation with specific lesions is generally poor. Most foci identified on standard MR scans are clinically silent.

Medicine categories

Treatment and management of MS should be targeted toward relieving symptoms of the disease, treating acute exacerbations, shortening the duration of an acute relapse, reducing frequency of relapses, and preventing disease progression.

Drugs approved for use in MS are referred to as disease-modifying drugs (DMDs). These DMDs can be further classified as immunomodulating (or receptor modulating) or immune-suppressives. Some immune-suppressants are also FDA-approved as antineoplastic agents.

Drugs which treat MS-related symptoms but do not modify the course of the disease, are referred to as symptom-management medications.

‘MS is not a death sentence’

Multiple Sclerosis SA (MSSA) is a non-profit organisation that provides support for MS suffers and their families wherever possible. MSSA head office is situated in Johannesburg and is responsible for MS events, activities and support in Gauteng, Kwa-Zulu Natal, Free State, Limpopo, Mpumalanga and North West. The Eastern, Northern and Western Cape provinces are managed by the Western Cape branch.

Confidentiality is highly respected. MSSA lay counsellors will assist where possible, and services include counselling, referrals to rehabilitation specialists, support and socialising groups, and home visits where possible.

Patients should also be encouraged to care for themselves. Firstly, a good attitude is essential. MS is not a death sentence, as with the right medication and attitude their life can still be rewarding, albeit different.

Many things can be done to ensure physical and mental fitness are at an acceptable level. These self-help regimes may include joining an MS support group, using occupational therapy, physiotherapy and speech therapy. Physical fitness that doesn’t lead to the body overheating, should be encouraged. Aqua aerobics, bio–kinetics, and yoga and walking, where possible, work wonders. Mental fitness can be sharpened by doing crossword puzzles, Sudoku and brain/mind training games on computers and smartphones.

MS is tough for patient caregivers so they also must also look after their mental state. Psychologists and counsellors can assist patients and family. MS is a critical disease affecting family life, mortality, disability, unemployment, divorce, suicide, cognitive impairment and more.

Cures for the spectrum of MS symptoms have not been found but a good quality of life is still in MS patients grasp. With the correct medication, medical treatment and attitude, there is an excellent chance of patients leading a relatively normal life.

For more information about the MSSA, confidential counselling or a comprehensive list of neurologists across the country, contact them on: