Ms is more than a challenge. It can fundamentally alter the way a person is able to grapple with the usual complexities of life. Ms is an illness of chronic uncertainty and change, of unpredictable loss and adjustment. The symptoms, however mild or severe, impact on the selfhood of the person living with them. No two people with ms have exactly the same set of symptoms - it depends on where the myelin has been damaged and the extent of axonal loss. Sometimes the symptoms are transient, they may clear up with no residual effect.
COGNITIVE AND EMOTIONAL DISTURBANCES: problems with short term memory, concentration, judgement or reasoning
BLADDER AND BOWL PROBLEMS: bladder problems include the need to pass water frequently and/or urgently, incomplete emptying or emptying at inappropriate times. Bowel problems include constipation and, infrequently, loss of bowel control
FATIGUE: a debilitating kind of general fatigue which is unpredictable or out of proportion to the activity. Fatigue is one of the most common (and one of the most troubling) symptoms of ms.
Visual disturbances include: blurring of vision, double vision (diplopia), optic neuritis, involuntary rapid eye movement, (rarely) total loss of sight
Balance and co-ordination problems: loss of balance, tremor, unstable walking (ataxia), giddiness (vertigo), clumsiness of a limb, lack of co-ordination
Weakness: this can particularly affect the legs and walking
Spasticity: altered muscle tone can produce spasticity or muscle stiffness which can affect mobility and walking spasms
Altered sensation: tingling, numbness (paraesthesia), or burning feeling in an area of the body, other indefinable sensations.
Pain may be associated with ms, e.g. facial pain, (such as trigeminal neuralgia), and muscle pains
Abnormal speech: slowing of speech, slurring of words, changes in rhythm of speech, Difficulty in swallowing (dysphagia)
Sexuality and intimacy: impotence, diminished arousal, loss of sensation Sensitivity to heat: this symptom very commonly causes a transient worsening of symptoms.
(The World of Multiple Sclerosis and the International Federation of Multiple Sclerosis Societies (Available at http://www.ifmss.org.uk/)
There is no cure - yet
There is no cure for multiple sclerosis. There are drugs that are said to slow down the progression of ms. These are the ABC drugs - Avonex, Betaseron, Copaxone.
Sometimes I feel like Oliver Twist watching the Governors sit down for a sumptuous meal. Avonex and Betaseron, are available in South Africa but at a price that put them far beyond my reach. Would medical aid fund the drug? Maybe.
I keep convincing myself, apart from the effects of a neurotic immune system that insists on seeing enemies that aren’t there, I am well. So, maybe another route to take is to see if I can keep the rest of me healthy and in balance. Plant sterols and sterolins have been extensively researched for their beneficial effect on the immune system. Sophisticated nutritional supplements have been formulated to deliver the sterols, sterolins, vitamins and anti-oxidants vital to my overall well-being. And I use them.
It is crucial to work closely with a neurologist and general practitioner. I interviewed my current neurologist before deciding I could work with him.
Is this your own room design? There was no big desk separating him from me. Just comfortable chairs. It was his design.Do you return phone calls? Yes, he replied. And he does.
What input will you give to my care?
Forty percent me and sixty percent you, he said.
The varying symptoms of ms can be helped by drugs. Bladder incontinence can be controlled, fatigue and spasticity might be helped. The understanding of the disease has been enhanced by a number of factors: advances in our understanding of the immune system; clinical trials which are beginning to identify treatments which can affect ms; a better understanding of the clinical features of ms; and advances in MRI imaging of the brain.
Dr.John N. Whitaker of the Department of Neurology, University of Alabama at Birmingham gives an exciting view of the forthcoming years of research, “... it is essential to resolve early in the [21st] century the discordance between clinical and imaging abnormalities and the uncertain correlative features of magnetic resonance imaging with the natural history of ms.
One day there will be a cure. Re-myelination? Sure, one day. Soon, I trust.