20 June 2002
By PATRICIA SOPER
Southland has a frustratingly high rate of multiple sclerosis, yet despite
its prevalence it is often misunderstood.
When the words multiple sclerosis are mentioned, there's usually a sharp intake of breath followed by silence.
Because it remains a stubborn neurological enigma, the reaction is understandable.
Despite several research programmes and billions spent on probable causes and cures, the results are frustratingly sparse.
Some things are known. In simple terms MS occurs when myelin, a substance covering the nerve fibres in the central nervous system becomes scarred, which in turn leads to diminished neurological function.
Diagnostic procedures are now conclusive thanks to the marvel of magnetic resonance imaging (MRI).
There are national support systems for sufferers and the disorder generally is slowly gaining a depth of understanding by the public.
So just what is MS? The words alone can be confusing. Multiple meaning many – sclerosis meaning scarring.
If you have MS, you have scarring in various places on your brain and spinal cord.
These are referred to as sclerotic plaques or sites. The scars are caused by the nature of the illness itself.
MS is an autoimmune illness, which in simple terms means that the body is attacking itself.
MS is not contagious; you can't catch it the way you would a cold or flu.
The healed sclerotic plaques form after what is commonly referred to as a relapse. The plaques are hard and impede the messages from the brain and spinal cord, causing a huge range of symptoms varying from distorted sensation to paralysis.
This can be permanent or temporary.
Relapse is an important term. It defines the most frustrating and anxiety-provoking aspect of the disorder.
When a relapse occurs, it means that more myelin is eroding from the nerve sheaths.
This erosion is called demyelination. Sometimes demyelination can happen without the patient's knowledge.
It can be silent and without symptom. But more often than not, patients experience a wide range of symptoms, often related to where the damage is occurring.
Remission usually follows these relapses, but the patient is often left slightly more disabled than before.
One of the most baffling and difficult aspects of early diagnosis is the fleeting nature of the symptoms.
A symptom that may be present for weeks such as numbness, blurred or double vision (diplopia), a heaviness in a leg or arm, can disappear for months, sometimes years, only to reappear later on.
Fatigue is a big issue. Most sufferers' report needing a lot of rest, which can be a huge problem in job retention and child rearing.
It can also place a strain on relationships.
Mutiple sclerosis has a geographical distribution.
It is widely recognised as a disorder of temperate climates and is uncommon in the tropics.
There is little evidence to suggest that the condition is an inherited one, but people with similar tissue groupings seem to be more disposed.
Theoretical causative factors include a latent viral infection contracted in childhood, which triggers when the body is under stress, but this is not conclusive.
Some people may have MS and never develop any discernible symptoms.
Others have one episode and never go into remission. This is the most aggressive type of MS.
By far the most common pattern is one of relapse and remission.
More women than men will develop the illness – in the ratio of two to three.
Although symptoms vary widely from patient to patient, there are recognised common denominators.
Aversion to heat is common.
Summer temperatures can be extremely trying, as can overheated rooms in winter.
Visual disturbance in the form of blurred or double vision – sometimes colours can appear faded, pins and needles, dulled or compete loss of sensation, weakness in a limb, clumsiness, depression, difficulty in swallowing to name a few.
The bladder and bowel may be affected, co-ordination reduced – sexual function can also be affected because of physical or psychological factors.
Tremor, affected balance and vision defects can also occur.
In the past few years, advances in treatment, especially in the area of helping patients to stay in remission has come in the form of the drug Beta Interferon.
The drug is available here and in some cases is subsidised by the government.
Steroid drugs are commonly given to patients having a relapse.
They help to reduce the inflammation associated with demyelination.
Coping with MS has its own set of unique problems.
Even people closest to the patient can misunderstand the illness.
Because many of the symptoms are sensory, in other words only felt and therefore not visible to anyone, communicating feelings can be an exercise in frustration.
Contrary to public perception, MS patients don't all have to use wheelchairs.
Some will, if only temporarily, some may need the help of a walking stick or other aid – many won't.
Having multiple sclerosis is not necessarily an issue of mobility.
This is a common misconception.
More than anything, it's living with the uncertain and unpredictable nature of the illness.
Frequently it's about having to accept the fact that help and support will sometimes be needed – if not constantly, then certainly during periods of relapse or ill health.
It can be a demanding illness to manage. Infections need to be treated
promptly, rest and diet are important, setting achievable goals and not
over-identifying with the condition are desirable if the patient is to
have a fulfilling life.
© 2002, The Southland Times