Around her twenty-first birthday, Selvi (name changed), hailing from an agricultural family living just outside Chennai, noticed some odd symptoms cropping up. Suddenly, her fingers began to go numb. Oddly, the numbness would sometimes jump from one hand to the other.
Her family, however, was always dismissive of her symptoms, even when she later began to experience blurry vision, muscle fatigue and difficulty walking. All of these, her family believed, were excuses Selvi was making up to avoid work around the house.
By the time her symptoms became debilitating enough to be taken seriously, it was too late and Selvi ended up permanently bedridden, as the Multiple Sclerosis (MS) that had ravaged her nervous system took its toll.
Unfortunately, says Dr Venkatraman Karthikeayan, the Consultant Neurologist at Kauvery Hospital, Chennai currently treating Selvi, this is an all-too-common story among MS patients in India. “MS is not a forerunner diagnosis even among physicians in India. Sometimes, tech-savvy patients come up with the possibility of MS before their doctors do. Unfortunately, Selvi and her family didn’t fall into that group.”
MS is an autoimmune disorder in which the body’s immune system begins to attack the central nervous system. “This happens because the signal from foreign matter that the immune system targets resembles the signal from the neurons of the central nervous system. So, the immune system gets confused and begins to attack the neurons as well,” explains Dr Venkatraman.
This damages the myelin sheath of the neurons, which is like the insulation around electrical wires. This reduces the ability of neurons to conduct electrical signals properly, leading to malfunctions in the corresponding organs.
For long, MS was considered to be a disorder affecting temperate climates and white populations only, says Dr Venkatraman. “So, it was initially thought that MS was caused by a lack of sunlight. But there is now growing recognition that it is caused by multiple factors.”
Genetic factors are also involved, though the genetic mechanism has not yet been isolated. Another contributing factor is the Epstein Barr virus (EBV)—a very common virus that affects a majority of people and generally passes without symptoms, though it can sometimes cause infectious mononucleosis. A recent study found that the risk of developing MS increased 32 times after infection with EBV. Finally, obesity and smoking are also contributing risk factors.
While the prevalence of MS in India was thought to be low, a distinct rise in cases has been recognised. While some studies have suggested that 8.3 out of every 1,00,000 people develop MS, a lack of comprehensive data implies that it could be affecting a larger population. Though MS can develop at any age, it is most commonly diagnosed in people in their 20s, 30s or 40s and is 2-3 times more common in women.
Awareness and early diagnosis of MS is vital, says Dr Venkatraman, because there is no cure for the condition and it can only be managed with medication. “MS is controllable if treated aggressively from the beginning. But without appropriate treatment, patients can end up with progressive disability within 15-20 years,” he explains.
Unfortunately, he adds, the most common type of MS involves flare-ups of symptoms that disappear after a short while. “85% of patients develop relapsing-remitting MS, where symptoms come and go after a few days. And if symptoms are not too difficult to live with in the initial stages, people tend to ignore them.”
Common symptoms that could indicate MS are:
Besides these, symptoms could also include pain, bladder problems, bowel problems, speech and swallowing difficulties, sexual dysfunction, and cognitive problems.
In many cases, says Dr Venkatraman, patients make a good recovery from flare-ups or attacks, though some problems may linger. However, if the flare-ups continue over years, it is likely to lead progressive degeneration and disability. “In our 20s, we have a rich neuron bank to compensate for the neuron loss caused by MS. However, by the time we are in our 40s, our brains start to naturally regress, and if further neuron loss occurs, disability is likely,” he explains.
MS is difficult to diagnose because there is no definitive test for the condition, says Dr Venkatraman. “An MRI scan to detect signature patterns of myelin disruption in the nerve cells is a key part of the diagnosis,” he explains. However, a conclusive diagnosis would include consideration of relevant medical history, lumbar puncture, neurological exam, MRI and a differential diagnosis to rule out other copycat conditions or conditions with overlapping symptoms. This also adds delay to the process of diagnosing MS.
Early diagnosis is important because the medication available does not necessarily reverse the symptoms caused by a flare-up, but helps to minimise its effects and prevent future flare-ups where possible.
“There are two types of medications used in treating the inflammatory stage of MS. First, when a patient has an attack or flare-up, they are given steroids for immediate relief. In some rare cases, patients are given a plasma exchange—the blood plasma is extracted and replaced with donor plasma or a plasma substitute to remove certain components that are causing the attack,” explains Dr Venkatraman.
More long-term treatment involves disease modifying therapies, which prevents further inflammation of the nervous system and reduces the chances of further flare-ups. These therapies range from moderately effective to highly effective. “The higher the efficacy of the medications, the greater the chances of serious side effects. There is no one-size-fits-all approach to DMTs, and they have to be carefully tailored to each patient’s needs and conditions,” explains Dr Venkatraman.
While the traditional approach has been to begin with moderately effective DMTs and escalate as the condition progresses, there is now growing support for “flipping the pyramid” and starting with aggressive treatment with highly effective DMTs in the initial phases, says Dr Venkatraman. “The logic is that with every flare-up the patient is losing neurons. So, it is better to start aggressively and taper down the medication over time,” he explains. While this approach does come with risks, patients and doctors are both finding this approach preferable for the significant difference in long-term outcomes it provides.
This article was published in association with Kauvery Hospital.