Multiple sclerosis (MS) is a debilitating condition of the central nervous system that is rare in tropical countries such as India. My mother died of the disease on December 16, 1996, at age 39. As I remember her on Mother’s Day (May 9 this year), I remember her illness too.
My mother grew up in Nagercoil, the biggest town in the Kanyakumari district of Tamil Nadu. Her first episode of MS occurred after my brother, four years younger than I, was born. Among the problems my mother faced was that she had no bladder control, and this often restricted her to the house. In the 1980s, adult diapers were hard to find in Nagercoil. My aunt, a doctor in the US, would ship them to us.
MS is more common in women than in men - as with a lot of things about this disease, scientists don't know why yet. When my mother was suffering from the disease, less than one in 10,000 women had the disorder.
MS affects the sheath or protecting covering of the nerves, which starts to deteriorate as the disease progresses. There is no test for MS. All a patient can do is run a few tests that rule out other problems. Trained neurologists can diagnose MS, but families are often left to deal with the day-to-day havoc it wreaks on the patient's body.
During my teen years, my mother could not speak on certain days; other times she could not remember who we were. I loved my mother dearly as she did me, but the condition takes a toll on everyone. One day, I saw my sleeping mother’s body covered with red ants. Even as I woke her up and removed the ants, I broke down into tears. Mother had not been aware of the ants.
It was around this time that I chanced upon a health article in The Reader’s Digest (we subscribed to the magazine) about someone's experiences with MS and how you can fight the disease even if you ultimately succumb to it. Hope stirred in my heart and I kept the magazine safe with me. I thought if I grew more aware of the disease, I could help cure my mother. Now, of course, I know that there's no cure for MS.
Probably because MS is a rare disease in India, the support system is weak.
“The advice for families would be to sit down with the doctor and understand the disease and understand the treatment that is being given. Because there are two sides to the treatment. One is when somebody has a relapse and the treatment that comes along with that. Other, is the disease-modifying agents that would be given for a long period of time. This has to be given for four to five years at least,” says Dr U. Meenakshisundaram, director of neurology at the Chennai-based SIMS Hospital.
“MS is not common, but it is not uncommon either if you look at it. It lies in that range. It is not one of those diseases that you would see commonly even in neurology practice. We do see cases, though,” Dr Meenakshisundaram says.
“The disease doesn’t follow the same pattern in everyone," says Dr Meenakshisundaram. "There are many types of multiple sclerosis. The most common state is called relapsing-remitting. There are also other types called primary progressive and secondary progressive. In the primary and secondary form of the disease, the disability and burden of the disease keep accumulating. We use something called an extended-disability score,” he explains.
“To make it simple, we do look at a person’s life and his daily activities. Over the years, the disease has the propensity to cause disability,” says Dr Meenakshisundaram, who is also the secretary of the Indian Academy of Neurology.
Dr Meenakshisundaram adds that there no biomarkers to indicate the presence of the disease - meaning a definitive test has still not been developed for it.
However, the symptoms of the patient and MRI findings help doctors diagnose the disease. “However, we can rule out other similar auto-immune diseases in patients: we use differential diagnosis to zoom in on the final findings. I always tell my patients to look out for other factors because there is no conclusive test,” Dr Meenakshisundaram says.
An autoimmune disease is one where the body's own immune system starts attacking healthy cells. There are many different types: celiac disease, lupus, psoriasis, rheumatic arthritis... multiple sclerosis.
According to Dr Meenakshisundaram, awareness about multiple sclerosis remains low despite the presence of top neurologists across the country. “The disease fundamentally affects the brain and the spinal cord. Typical symptoms include loss of bladder control and loss of vision in one eye,” Dr Meenakshisundaram says.
He adds that awareness levels can be improved in India by patients and caregivers showing due diligence. “For instance, if a patient goes to an ophthalmologist for loss of vision in one eye, they should also visit a reputed neurologist,” says the doctor. The government should also reach out to the public, he adds.
May 30 is World MS Day.
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