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Multiple Sclerosis

WHAT IS MS?

MS causes damage and deterioration of the myelin covering which surrounds nerve fibres in the central nervous system. Myelin acts as an insulator and helps conduct nerve pulses or messages from nerve endings to the brain and visa versa. Scarring of the myelin causes a slowing down, distortion or, in severe cases, complete blockage of the flow of messages from the nerves to the brain and back again - read a more detailed clinical overview of MS or watch a short video.

TYPES OF MS

While MS can follow different patterns for different people, its clinical course has been classified under 4 broad categories, each of which might be mild,  moderate  or severe. They are:

Relapsing Remitting MS – 85% of newly diagnosed people fall into this category – a significant percentage of whom subsequently progress to secondary progressive MS within 10 years of  diagnosis.   Secondary Progressive MS –  Before the disease-modifying medications became available, approximately 50% of people with relapsing-remitting MS developed this form of the disease within 10 years. Long-term data are not yet available to determine if treatment significantly delays this transition. Read more   Primary Progressive MS – up to 10% of the MS population are initially diagnosed with primary progressive MS   Progressive Relapsing MS – up to 5% of the MS population

HOW IS MS DIAGNOSED?

MS is not easy to diagnose. There is no specific test that shows a person has MS, and it shows up differently in each person. MS is typically diagnosed by observing the occurrence of symptoms over a period of time, combined with the results of medical tests. That is why there is always a delay between the appearance of symptoms and the diagnosis of MS. In addition to neurological examination and a comprehensive medical history common medical tests include, magnetic resonance imaging (MRI), lumbar puncture and evoked potentials - read more about diagnosis. This is a very important time for newly diagnosed people with MS which, if not managed properly, may have negative long term effects for the individual and their family.  Read more about the service delivery benchmarks for the newly diagnosed.

DEMOGRAPHICS

MS is an unpredictable disease that primarily affects people between the ages of 20 and 40. Less than 5% of patients present with MS before the age of 16. MS occurs more commonly in geographical areas further away from the equator compared to tropical and sub-tropical regions closer to the equator. Countries with a relatively high frequency of MS include northern United States, Canada, northern Europe, New Zealand, South Africa and southern regions of Australia. Epidemiological surveys have determined that genetic linkages can increase an individual's risk of developing MS - find out more about genetic research. Australia wide, in excess of 1000 people are newly diagnosed each year, which exceeds the annual population growth rate. The 2008 population nationally was 18,000. 74% of all cases are women.

While precise numbers for the Northern Rivers area are not known the number is believed to be in the vicinity of 300. This area is one of the fastest growing regions in Australia with population increases around double the national average. Anecdotal evidence is that a significant population movement from areas with a higher prevalence of MS, amplified by an older population mix, also contributes to an increasing prevalence of MS in the region - read more about prevalence, disability levels and referral pathways in the Northern Rivers area.

WHAT ARE THE SYMPTOMS AND ISSUES?

Symptoms and their severity are completely unpredictable and differ enormously. They may include loss of balance and co-ordination, diminished vision, weakness of limbs, extreme fatigue (especially during hot weather), impaired speech and loss of bladder control. A person with MS might experience one, several or all of these symptoms, depending on the location and extent of damage to nerve tissue. A study titled 'Living with Multiple Sclerosis in New South Wales at the beginning the 21st Century identified 20 such issues - including  87% of pwMS experience more than average levels of fatigue, 68% experience heat intolerance and 58% can experience cognitive problems .Read more about this study.

HOW IS IT TREATED?

Despite extensive worldwide research over many years there is no known cure for MS. There are, however a range of treatments that may delay its progression - read more about treatments. General practitioners provide guidance on medications that may delay the progress of MS. The MS Society is committed to educating doctors and health professionals about MS so that they can provide specialist management to people with MS at the hospital, community health centre or private practice where they are located.

IMPACT ON DAILY LIVING

Longitudinal studies show that around 50% of people with MS are independently mobile after 15 years and can live normal and productive lives. The MS related health care needs for this population grouping are broadly addressed via GP's and, increasingly (for those with access to the internet), by a range of readily accessible information resources. For the newly diagnosed, the MS Society, in collaboration with medical specialists and GP's, can play an important role. For the 50% (including many newly diagnosed) who are not able to live normal and productive lives there is broad consensus about the nature and timing of support services - read more about MS Needs, Issues and Expectations.

HEALTHY LIVING WITH  MS

For a person living with MS, the road to wellness involves more than treatment of the disease. Equally important are health promotion and prevention strategies, a strong support network of family and friends, satisfying work and leisure activities, a meaningful place in the community, and adequate attention to one's inner self. Exercise, food and diet, preventive care, alternative medicine, yoga, managing stress can all have an important part to play. MS Australia can also assist with lifestyle planning  - read more about healthy living.

EXERCISE, SPORT AND RELAXATION

Even in the earliest stages of MS there is a role for physical therapy/exercise. In addition to being essential to general health and well-being, exercise is helpful in managing many MS symptoms.  There is a growing body of evidence that improvement in mobility, activities of daily living, quality of life, prevention of complications, reduction in healthcare utilization, and gains in safety and independence may be realized by a carefully planned program of exercise, functional training, and activities that address the specific needs of the individual  - read more about MS and Exercise, Sport and Relaxation.

COPING STRATEGIES

While most people with MS learn to cope with the disease and continue to lead satisfying, productive lives it can feel overwhelming at times. It can involve changes in routine and lifestyle that involve reviewing goals and plans, redefining roles and family structure, changing communication patterns, and dealing with emotional, physical and financial stress.  All this can be very hard, even for the most capable of persons and the most stable of relationships. The MS Society observes that many people with MS discover peace of mind once they have worked through their reactions and developed a life philosophy which deals with the  problems of living with MS - read more about coping strategies.

QUALITY OF LIFE WHEN LIVING WITH MS

Although Quality of Life has received increased research interest over recent years across many chronic illnesses, until recently little research has focused on QoL in people with Multiple Sclerosis (pwMS). Curiously, in health services generally and medical practice in particular, QoL tends to be equated to physical health, despite that fact that it has been well demonstrated via meta-analysis studies that quality of life and health status are quite distinct concepts. In reality, this “health-related” approach to QoL underestimates the challenges faced by pwMS with activities of daily living and basic social routines. Research by the NSW MS Society suggests that it has stronger associations with psychological factors - read more about Quality of Life.

HELP DESK

The Road Map to MS Support Services on the Northern Rivers includes an MS Help Desk that references details of regional support services including a summary of programs provided by MS Australia with regional relevance. It includes details of regionally based MS nurses, support groups, the e-mail based regional MS Network of Care, regional advocacy support, a 1800 help line, the peer support program, talk to the doctor and a host of related services - visit the Help Desk

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Next - Quality of Life when Living with MS

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