“I want to dance with my daughter, take Marble (pet dog) for a walk, go on a second honeymoon with my husband, travel alone and just go out and buy something for myself.” These are the wishes of Swarnalatha, a young woman who has been struggling with a rare disease called Primary Progressive Multiple Sclerosis for the past 14 years in India. Swarnalatha has been bound to a wheelchair for all these years. While there is no cure for the disease, her dream to do something as simple as dancing with her daughter keeps her going.
When Swarnalatha was diagnosed with Multiple Sclerosis she was 29 years old but the doctors say that the triggers and symptoms should have occurred much earlier.
On the occasion of World Multiple Sclerosis Awareness Day (May 30), a documentary called ‘‘I Am Limited Edition’ was premiered in Chennai recently. It showcased the struggles of Multiple Sclerosis patients through the experiences of Swarnalatha as she tries to navigate her medical conditions, social mobility and family life. While there is no definitive cause identified for the disease, the documentary also highlights that stress is one of the factors that trigger Multiple Sclerosis.
Ann Gonsalvez, Chairperson for the Chennai Chapter of All India Multiple Sclerosis Society and Board Member of Multiple Sclerosis International Federation, London, observes that amidst the hustling urban life, where youngsters run from pillar to post to build a decent lifestyle, they miss out noticing the smaller symptoms at the earlier stage that change their life altogether.
Speaking at the press meeting of the documentary premiere, Dr Venkatraman Karthikeayan, a Neurologist whose vision is to make Multiple Sclerosis patients free from disability said, “Disabilities caused by Multiple Sclerosis can be prevented if the symptoms are noticed at the early stage. The lack of awareness of the symptoms and the disease itself is one of the major factors that lead to disabilities among Multiple Sclerosis patients.”
Indian Council of Medical Research (ICMR) estimates that Multiple Sclerosis affects about 20 persons per lakh population (although this may be an underestimation). While collecting data on the patients affected by Multiple Sclerosis in India has been a challenge for many years now, the ICMR launched a National registry of Multiple Sclerosis (MS)- Indian Multiple Sclerosis and Allied Demyelinating Disorders Registry and Research Network (IMSRN) on June 11, 2022.
To understand more about the disease and how citizens can fight it, we spoke to Dr Venkatraman Karthikeayan and Ann Gonsalvez on the various aspects of Multiple Sclerosis.
Here are some excerpts from the interview:
What is Multiple Sclerosis?
Multiple Sclerosis is an autoimmune disease, a neurodegenerative disorder caused by the immune system mistakenly attacking the myelin sheath, which is a protective coating around nerve fibres. This results in inflammation, which further damages the myelin sheath, as well as the nerve cells themselves and the cells that produce myelin. This brings spasticity in the body especially hands and lower limbs. It predominantly affects women particularly those between 20 and 40.
“There is no single cause that has been narrowed down because if that was found we could have prevented the occurrence of Multiple Sclerosis. We have a list of causes that may work as a multi-factorial way to cause Multiple Sclerosis. The most talked about risk factor is the Epstein–Barr virus. This can affect someone in the late childhood or early teen phase and can manifest or trigger Multiple Sclerosis in a few people who are genetically prone to auto-immunity. This is the latest concept,” says Dr Venkatraman. In addition to this, there are other factors such as vitamin D deficiency, very low sun exposure, teenage obesity among girls, early smoking and alcohol consumption.
What are the symptoms of Multiple Sclerosis?
The symptoms are based on the central nervous system where it gets affected. Multiple sclerosis affects the white matter tract in the brain. As a result, patients with Multiple Sclerosis experience many symptoms, including imbalance, fatigue, numbness (pertaining to one or two fingers, part of the limb or entire limbs, rarely numbness in one half of the body) and tingling, muscle spasms, walking difficulties, pain, and bowel or bladder problems, brain fog, blurring of vision – leading to total blindness, tremors, slurring of speech – in short, 41 invisible symptoms.
“Very commonly, men find that they are not able to sense the shaving razor on one side of the face. Similarly, women feel a difference or numbness in one side of the face while applying facial creams. Very rarely, brain stem lesions can lead to Trigeminal Neuralgia which is characterised by severe sharp pain on the facial region that is precipitated by even touch, air blowing on the face or while brushing the teeth,” says Dr Venkatraman, adding that these are some of the symptoms that can affect the brain stem.
Then comes the symptoms from the spinal cord, which comes close to the represented symptoms from the brain, including numbness in limbs (one part of the limb or the entire limb). Sometimes spinal cord symptoms can also cause pure numbness in the groin region. “The person affected will not be weak but they will not know which surface they are walking and how much pressure they should apply to walk on it. They will feel wobbly which might result in some of them falling or fear of walking as they tend to fall,” he adds.
This apart, when the optic nerves get involved, it causes blurring of vision. It can be as subtle as the desaturation of colour, mainly for the red colour. “When they look into the signal, the red may appear as maroon or magenta,” he says, adding that numbness, imbalance and optic nerve lesions top the symptoms with which Multiple Sclerosis presents to the clinic.
How can Multiple Sclerosis be detected at the early stage? What should one look out for?
Barring the visual blurring that happens, the symptoms may not be very specific to Multiple sclerosis. Anything that is bothering the neurological system may produce the same symptoms. The chances for Multiple Sclerosis are that it is presented in a more subtle form than other acute neurological conditions affecting the same brain stem and the spinal cord.
“Anyone who has even a small abnormality in their neurological system including the aforementioned symptoms should report to the doctor within the first 24 hours. Barring the visual blurring, none of the symptoms can clearly confirm Multiple Sclerosis as it is common to other neurological issues. The only clue for neurologists is the age group (20 to 40 years),” says Dr Venkatraman.
What is the clinical diagnostic process of Multiple Sclerosis?
“If a neurologist is experienced enough, the diagnosis begins at the clinic itself. They can see a patient and say it is Multiple Sclerosis. On the other hand, a less experienced neurologist can see it is some kind of a neurological issue (but may not be able to zero in on multiple sclerosis,” says Dr Venkatraman. He adds that in both cases, the first step is to take an MRI, which will give the diagnosis of a demyelinating disorder (a basket of disorders under which Multiple Sclerosis also falls). Multiple Sclerosis can be confirmed or ruled out with a few blood tests. There is no single blood test to confirm Multiple Sclerosis.
There is a test called the Oligoclonal bands (OCBs) test – a test to look for inflammation-related proteins in the cerebrospinal fluid, which is used to confirm Multiple Sclerosis. The cerebrospinal fluid is obtained by doing a lumbar puncture in the back and drawing a sample of cerebrospinal fluid.
“If the OCB is present in that fluid and absent in the blood, there is a 90% chance that it is Multiple Sclerosis. However, the reverse statement may not hold true. That is the closest to a test that we can go for, to confirm Multiple Sclerosis. The rest is all a combination of clinical suspicion, MRI features, ruling out a few other demyelinating disorders and finally making a diagnosis of Multiple Sclerosis,” he adds.
What are the treatment options available for Multiple Sclerosis in India?
Treatments can be classified into three categories: treatment for the immediate symptoms, treatment for an acute attack and treatment to prevent any damage to the brain both symptomatic and asymptomatic. The treatment followed for an acute attack is usually a course of high-dose steroids, preferably through the intravenous route.
Multiple Sclerosis is not a very disabling presentation but there are cases presenting that too. If the patients are still disabled at the end of the steroid therapy, then doctors go for a treatment called plasma exchange. It is also a purification method of the blood.
If the patient is cured of the symptoms with one of these treatments, doctors shift to long-term maintenance therapy called disease modification therapy. This has three layers called – moderate efficacy, moderate to high efficacy and very high efficacy. The drugs in these groups are chosen based on the patient’s medical history, age, marital status, pregnancy plans (as it mostly affects women), affordability, and ability to understand the risks and side effects that may come with the drugs.
Theoretically, the higher the efficacy the more the chance for the side effect. Notably, not all patients get the side effects and there are also ways to prevent it.
“The neurologist cannot prescribe the drug straight away. They should consider all the aforementioned factors including the patient’s family, as family plays a major role in taking the decisions regarding the treatment,” says Dr Venkatraman.
MSSI is the only organisation working on Multiple Sclerosis in India. There are other groups that work on disability though, says Dr Venkatraman.
The Multiple Sclerosis Society of India (MSSI) is a registered voluntary, non-profit organization established in 1985 that work for the welfare of people affected by Multiple Sclerosis and is affiliated with Multiple Sclerosis International Federation (MSIF UK ). There are nine regional chapters in India including the one in Chennai.
Speaking on how patients can get in touch with the MSSI, Ann Gonsalvez, Chairperson, says that most people reach them through the Internet or referral from the doctors. They also pick patients from government hospitals.
“We get patients not only from the urban areas but also from the rural areas across the state and country. Since Multiple Sclerosis is covered under the Tamil Nadu Chief Minister’s Comprehensive Health Insurance Scheme, many outstation patients also come to the government hospitals in Chennai. But the continuity of medication is a problem in these hospitals. Some of these patients cannot walk. How can they come to hospitals then? That’s where we step in to help minimise their difficulties. Sometimes we send the medicines to the patient’s home,” she adds.
How accessible and affordable are these diagnostic options, treatments and medicines for people from the lower-income or middle-class backgrounds in India, who may be affected by Multiple Sclerosis?
Some 15 years ago India imported all these medicines and there was not much research into Multiple Sclerosis. The medicines were definitely out of reach even for patients from middle-class families.
“Now that India is up for manufacturing medicines, we are able to make most of these medicines in their generic form. Except for two or three drugs which are very costly, as there are no direct generic molecules, all other drugs are accessible to the patients. There is no issue in accessibility of the medicines but there might be some issues in the affordability. This is where organisations like MSSI come into the larger picture of helping patients below the poverty line,” says Dr Venkatraman.
For a patient who is symptomatic or diagnosed with Multiple Sclerosis, we try to treat it or prevent another attack with the drugs. But, there is going to be a residual symptom left in the form of imbalance in walking or weakness. The symptoms can be seen as visible and invisible symptoms. While imbalance and weakness fall under the visible symptoms, issues in vision or bladder issues fall under the invisible symptoms category.
To address these visible symptoms we need the assistance of physiotherapists, especially to deal with tremors. We need very rare specialists called occupational therapists who are not available outside the metro cities or tier-two cities. Then comes the visual aids for those whose vision is affected.
The most troubling of all the invisible symptoms is fatigue. Fatigue in India is equalised to laziness in general. But the fatigue experienced by a Multiple Sclerosis patient is a hundred times as much as the one experienced by someone who does not have Multiple Sclerosis. Fatigue affects the occupation of the patients, who end up being fired or resigning themselves as they cannot compete at the same pace at work that they were earlier doing. They have either cognitive fatigue or physical fatigue. Both make them less useful to the organisation that hired them.
A combination of health education and cognitive behavioural therapy is used in the Fatigue Management Programme. Notably, this programme is done only in Chennai that too at free of cost at Kauvery Hospital in coordination with the MSSI.
Similarly, physiotherapists require special training to deal with patients affected by Multiple Sclerosis. Since there are no free services for such physiotherapy, it requires sponsorship from someone for the patients to access it as it becomes unaffordable after a point.
Does Multiple Sclerosis affect the mental health of patients? What are the support systems we should build around it?
Multiple Sclerosis patients not only suffer from depression and anxiety but also often go through some cognitive issues. “For instance, a 30-year-old Multiple Sclerosis patient may have a memory disturbance akin to that in a 50-year-old person. Some of the subtle things will come out only when they are in jobs that require precision and rapidness in decision-making. Understanding the mental health of patients with Multiple Sclerosis starts with understanding their present cognitive ability. Even for perfectly normal Multiple Sclerosis patients, not being able to do things that they were able to do a year ago leads to the beginning of a subtle depression or anxiety. This makes them isolate themselves or become an altogether different personality,” notes Dr Venkatraman.
He further adds that the clinical psychologist not only deals with depression but also helps the neurologist in assessing the cognitive function of the patient which will help in developing the cognitive therapy for them.
“Thus, the language that a physician uses to explain such a scientific issue to Multiple Sclerosis patients in order to help them understand the importance of psychotherapy is more important; it cannot be done in the same way as while prescribing psychotherapy to any other patient,” he points out.
Is health insurance available for Multiple Sclerosis?
Insurance companies does list a lot of conditions in critical care and they provide money for only such conditions. Multiple Sclerosis can be subtle in its presentation. But insurance companies are covering the treatment of acute Multiple Sclerosis attacks, at least on paper.
“As a neurologist, I have a lot of disappointment with the way the insurance companies are operating. No neurological disease ends in the hospital. If a person gets a stroke, they are still going to have a defect when they move out of the hospital. Who will pay for it? Similarly, Multiple Sclerosis patients require continuous therapy and medication throughout their life. But none of the insurance companies covers physiotherapy. The residual disability comes with every neurological condition, including Multiple Sclerosis, and is not covered under any insurance. The post-hospitalisation and rehabilitation need to be incorporated as part of the package,” insists Dr Venkatraman.
Ann Gonsalvez points out that until February 27, 2023, there was no mention of insurance coverage for Multiple Sclerosis and the disabilities caused by it. The Insurance Regulatory and Development Authority of India sent a circular on February 27, 2023, asking all the insurance companies to cover Multiple Sclerosis and the disabilities caused by it. “So far, only three companies have come up with a coverage scheme and we are waiting for the paperwork to be done by the other companies as well,” she says.
Is there proper data on patients affected by Multiple Sclerosis in India?
In India, we have a horizontal medical system. One can consult with at least four neurologists on the same day in an urban city. “If I do not get to see a patient’s condition vertically down over a period of time, I will definitely not be able to collect data on him. Whenever this doctor shopping ends, then a proper census would come,” says Dr Venkatraman.
As of date, there are only 5,000 people across India affected by Multiple Sclerosis that are registered with MSSI, while there are over one lakh patients diagnosed with Multiple Sclerosis across India.
“Since Multiple Sclerosis affects the young female population in particular, we find them reluctant to approach us or register with us as it falls under their ‘marriageable age’. The stigma attached to it makes it hard for the families also to acknowledge. Since the Tamil Nadu government has made it easy to get disability cards, it has been a little easier for MSSI to create awareness among patients from underprivileged backgrounds. However, that is not the case with other states,” says Ann Gonsalvez.
How do you think the government can step in to address the issues faced by Multiple Sclerosis patients?
“My primary expectation from the government is that they should build disabled-friendly infrastructure, including the platforms on the roadside, ramps and toilets. This will help Multiple Sclerosis patients to move out of their homes first,” says Dr Venkatraman. He added that it would also be beneficial if the government can give the drugs used for the treatment of Multiple Sclerosis at a subsidised rate in government hospitals.
Ann Gonsalvez also says that the drugs should be made available at an affordable cost and the pension for disabled people increased.