MS – The invisible disease

THE EDITOR: MS refers to Multiple Sclerosis. MS is a condition of the nervous system in which the coverings of the brain and spinal cord (the Myelin Sheath) are initially eroded by the immune system, followed by specific nerves and to the organs or tissues supplied by them. This is accompanied by related functional difficulties and problems. The theme for World MS Day this year is “My Invisible MS.”

Once affected, the symptoms of MS are usually not visible and not understood. They can be likened unto, for example, the putting on of weights, or concrete blocks, or sandbags of unequal weights, on the feet, or having tumors of unequal strengths on the lower legs, so that the patient experiences difficulty in walking, in maintaining balance, and experiences an unstable gait, weakness and fatigue.

On another level, when the hands are affected, they seem to be covered with a strong starchy substance that hardens over time, though without equal coverage in both hands. This substance inhibits the ability to use the hands to write, to button one’s clothes, feed one self and to carry out other fine skills such as braiding the hair or hand sewing.

Similarly, disturbances in vision may be likened unto the wearing of cloudy shades over the eyes, resulting in blurred vision, difficulty in seeing clearly or in reading; another set of symptoms of MS, the experiences of which are not visible to others.

An MS patient’s sensory issues can be simulated as the wearing of a long insulated long-sleeved coat, into which various sizes of nails, pins and needles are imbedded, in such a way that the points of the pins needles and nails are towards one’s skin . Any movement, therefore, gives rise to a range of pain-related experiences such as "needles and pins," spasm, deep-seated pain of various degrees of intensity and pressure, sometimes experienced as bone pain or nerve pain. But the coat is invisible. It also conceals the erratic behaviours of the bowels and bladder as well as of the stomach. Meanwhile, the individual appears to be normal.

These simulations are used to dramatise the reality which MS people actually experience.

Our research, conducted with members of our group, the MS Support Foundation, shows that difficult symptoms expressed were; optic neuritis, fatigue, right leg weakness, irregularity, constipation, left arm immobility, stiffness in chest and worsening eyesight. The most frequent of all symptoms were pain 50 per cent, disability 26 per cent, imbalance 52 per cent and numbness 26 per cent.

Dr Daphne Phillips

President / MS Support Foundation