Never-ending problems of patients with multiple sclerosis

Chennai: Fortytwo-year-old Raja*, who lives in a town 100 km from Chennai, travels down to the metropolis to get his weekly-once injection for multiple sclerosis (MS) at Tamilnadu Government Multi Super Speciality Hospital, Omandurar.

However, for the past four months he has been sent back due to unavailability of the drug. He was diagnosed with the condition four / five years ago and has been under treatment since.

“My left hand was becoming numb quite often and would not have any feeling when touched. I was informed by the doctor that I have multiple sclerosis and was advised to take injection twice weekly. That makes me travel twice to Chennai from my hometown,” says the man who is barber by profession.

Soon after this, the doctors shifted him to another drug and due to its efficacy, he is being give injection only once a week. But he is taking alternative medicine with the help of Multiple Sclerosis Society (MSS), Chennai chapter, as the drug is not available in hospitals.

Raja is not alone in this situation: there are close to 120 patients in the city, as per data maintained by Multiple Sclerosis Society, battling several issues. Although those belonging to the upper strata of society are able to access treatment, middle-class and underprivileged patients are the ones who are affected.

Latha*, age 38, is another such patient from Chennai who has been taking treatment from the same hospital.

“They give whatever injection comes. In the past, the doctors suggested to refrain from taking steroids as it has terrible side-effects. But now, the same practitioners are prescribing steroids. When a knowledgeable patient questions them, they downplay the whole issue,” says another MS patient.

Latha had her injection at the Omandurar hospital; later, she was referred to Stanley Government Hospital. “When I went there for the injection, I was told that they have only two shots for patients who are taking treatment there. I have been asked to come a week later,” she says.

As she was not administered the drug, she experienced blood clot and was immediately admitted to Rajiv Gandhi Government General Hospital. “The medicine was available there and as Latha was given the injection, it stopped her from going to a critical stage,” says her husband.

When the treatment is not regular, Latha’s vision gets affected and in Raja’s case, he would not be able to work with his left hand.

Till the drugs are replenished at the government hospitals, Latha has been offered alternative medicines from the MSS.

However, doctors from government hospitals, on condition of anonymity, refuted the allegations and called them false claims.

“We have been getting regular supply of medicines and patients are taking the treatment free of cost,” the doctor said.

Asked about steroids, he said, “When the condition of the patient is severe, we have to use steroids for treatment and do not administer if there is no need.”

A neurologist said, “The possibility of other diseases have to be excluded to diagnose multiple sclerosis which was also discussed along with other things during a global-level convention. It is common in Western countries with various symptoms and in India it majorly affects the vision of patients.”

Currently, the treatment is offered at Stanley, Rajiv Gandhi GGH and Omandurar GH in city.

While this has been the struggle of multiple sclerosis patients on the treatment front, they are constantly subjected to mental trauma also.

“The patient is referred to another hospital without even knowing if the drug would be available there. The reason for inconsistent availability is not known,” says Multiple Sclerosis Society, Chennai chapter honorary chairperson, Ann Gonsalvez.

In addition, the patients are not given disability certificate as their condition is hidden. “The patients may not look like they are differently-abled, but only when they make movements, it is visible,” Ann Gonsalvez adds.

She takes the patients living in Chennai to the National Institute for Empowerment of Persons with Multiple Disabilities for getting the certification. However, if they live elsewhere, it becomes a problem, like in the case of Raja.

Ann Gonsalvez states that the neurological condition can affect other organs. “While for one person it may be the limbs, for another it may be eyes. It is different for different patients,” she says, and adds that the reason for this has not been identified.

BREAKING THE JARGON

Multiple sclerosis is a potentially disabling neurological condition that affects the central nervous system of the human body. The signs and symptoms differ from one individual to another.

World Multiple Sclerosis Day is observed 30 May every year and the theme for this year is ‘The Invisible Symptoms of MS’.

“Women are more susceptible to be affected with Multiple Sclerosis (MS) than men in the ratio of 1:3,” said Apollo Hospitals consultant neurologist, Dr M R Sivakumar, at an event held in the city to observe World MS day.

“It exhibits wide range of symptoms such as tingling sensation, blurred or double vision, slurred speech, weakness of muscles, fatigue, bladder or bowel incontinence. However, it is not contagious, fatal or a hereditary disease. There is no treatment to cure the disease but can be managed. Although it damages the nerves, the pattern is distinct for each patient,” he added.

(With inputs by Suriya Prasath)

Bhavani Prabhakar