Living with a mysterious disease

Padma Panniker considers herself lucky.

Although she suffers from blurry vision and chronic pain, she can still move, and even drives herself around; something unusual when compared with many multiple sclerosis (MS) sufferers.

“Some of them are wheelchair-bound and even lose the ability to speak because of the illness,” she said. “I guess I am lucky to have been spared the worst part of MS.” Padma’s ordeal began in 1974 when she could not walk properly, suffered neck pains and lost the vision in her right eye.

Admitted to Kuala Lumpur Hospital, she endured a battery of tests as doctors tried to diagnose her illness.

“They thought I had a tumour in my neck but could not find it,” she added.

“They conducted test after test and it was a very difficult time. I had three children who needed me and I couldn’t do anything for them.” “After a month, a neurologist finally said that it could be MS. I was so relieved that I could finally put a name to the illness.” While she may have been spared from the most severe effects of the disease, Padma’s journey was not easy.

“I suffered from numbness, bladder problems, weakness in my right side and other side effects from the medication which included inflammation of the joints,” she said. “I was often tired, and suffered from blurry vision, especially at night.” Having lived with MS for more than 30 years, Padma said that while there is no cure, a positive attitude and support from family and friends helped a lot.

Today, Padma and some other MS sufferers are using their illness to help others.

Five years ago, they set up the Multiple Sclerosis Society of Malaysia to give counselling and promote MS awareness.

“We hope more patients will join our support group. I know from experience that after an MS diagnosis, you will be depressed, more so when you are in pain and cannot walk,” Padma said.

“We offer patient-to-patient counselling because we understand what MS sufferers go through.” University Malaya Medical Centre consultant neurologist Dr Chong Heng Thay said the challenge in treating MS is having it diagnosed early because the symptoms almost always mimic other illnesses.

MS is a rare illness, and at times, doctors can miss the symptoms.

“We should pay more attention to the disease because in misdiagnosing, we lose the opportunity for early treatment.” MS is a chronic and often debilitating disease that attacks the central nervous system, destroying myelin, the fatty substance that coats and protects nerve fibres in the brain and the spinal cord.

When myelin is damaged, the messages that travel along that nerve may be slowed down or blocked. This would ultimately cause the deterioration of the nerves, a process that cannot be reversed.

People with MS will experience numbness or weakness in one or more limbs, partial or complete loss of vision, double or blurry vision, tingling or pain in parts of the body, fatigue and dizziness.

However, these symptoms can vary widely, depending on the damage and which particular nerves are affected.

MS can be difficult to diagnose early because symptoms often come and go; sometimes disappearing for months.

Women are more likely to have MS than men and it usually affects those between 20 and 40 years old.

Chong said MS is still a mystery. “There are no known causes and we don’t know why the immune system attacks the body’s nervous system.

“What we know is that the cells attack the insulation layers of the nervous system, causing them to break down and eventually impair function.

“The attack will cause inflammation to the nervous system and cause numbness, weakness and blurry vision.

“The inflammation usually takes weeks to heal and eventually the patient gets better. But if the attacks are frequent, they will eventually cause disability. The patient may not be able to walk, talk and would lose his vision.” Early treatment is vital because it will help prevent frequent attacks which could lead to disability for MS patients.

As MS is incurable, the targets of treatment would be to suppress the immune system, prevent recurring attacks and to lessen the pain.

“The problem is that the more attacks the patient gets, the more disabled they become. Once disability has set in, we cannot reverse it. If we can diagnose the patient early, we can minimise the attacks.” Chong said treatment for MS has improved over the years with new medication.

To raise awareness, the first World MS Day was held on May 27. From now, it will be celebrated on the last Wednesday of May.

The global MS movement undertakes research into treatment to eradicate the disease, helps other MS societies to support sufferers and campaigns for the rights of MS sufferers.

Copyright ©2009 Singapore Press Holdings Ltd.