Why multiple sclerosis remains under-diagnosed in India, and what needs to change

Multiple Sclerosis, by its core definition, is an autoimmune disease that affects the central nervous system. This disease leads the immune system to mistakenly attack the myelin sheath, the fatty layer responsible for giving the brain’s white matter its distinctive colour, disrupting the transmission of signals across motor, sensory, visual, cognitive, and autonomic systems. This leads to commonly-experienced symptoms such as unexplained weaknesses, tingling sensations, sensitivity to heat and numbness in the feet- and due to easy dismissal arising from the commonality of these symptoms, many individuals with multiple sclerosis remain undiagnosed, further worsening the brain and body’s condition. These unchecked symptoms could lead to them experiencing a relapse – a sudden onset of these symptoms, the intensity of which differs from case to case.

The burden of under-diagnosis

The issue is lack of awareness around this rare disease: as estimated by the Multiple Sclerosis Society of India (MSSI), the approximate number of persons with MS in India is close to 1.8 lakh. However, only about 35% of these cases are diagnosed and registered through organisations such as MSSI. Therefore, a whopping 65% of this number may be living with undiagnosed multiple sclerosis, suggesting that they suffer silently, without proper support, and are uninformed about the root cause behind their symptoms.

Studies indicate that both physical and mental aspects of health are deeply affected, causing depression, physical disability and fatigue, leading to an overall drop in quality of life.

The heat factor

According to a 2024 survey, 80% of Indians between ages 18 to 50 experience at least one symptom of stress on a regular basis, with women being disproportionately affected. This, coupled with India being geographically positioned in a high temperature zone, and the fact that women are more susceptible to MS suggests that Indian women between the ages 18 to 50 may have the highest chances of suffering from undiagnosed multiple sclerosis.

MS also afflicts males, and they too may suffer relapses worsened by the same triggers, though generally at a lower prevalence and with varied presentation across age groups and heat exposure. Adding to this, men with MS may experience more severe neurodegeneration and cognitive symptoms – although the root cause remains unclear. Men are shown to have higher chances of being diagnosed with primary progressive MS (PPMS). This type of MS is characterised by a lack of remissions and symptoms that don’t improve.

Most Indians therefore, undergo MS relapses triggered not just by stress, but also by infections, and prolonged heat.

Dismissal of symptoms due to their commonality in nature is not the only factor behind the high ratio between diagnosed and undiagnosed populations affected by MS; lack of awareness among the public and healthcare providers, uneven access to specialist neurologists and MRI diagnostics, and limited data systems for tracking the disease nationwide all contribute to the problem.

A scalable solution

To bridge this gap, especially in rural settings, one scalable solution is through using the National Health Mission’s Accredited Social Health Activists (ASHA) worker network. Nearly one million ASHAs already engage with rural communities, track symptoms, and help people seek care. Training ASHAs to spot red-flag neurological signs, such as persistent numbness, tingling, and unexplained fatigue that worsens in heat, can greatly reduce missed diagnoses. At the same time, improving primary health centres (PHCs) and community health centres (CHCs) under initiatives such as the Aardram Mission in Kerala to include basic neurological screening tools and MRI referral pathways can boost early detection in underserved areas. Supported by targeted education for physicians, including accessible continuing medical education (CME) programmes for general practitioners on recognizing MS, triggers, and referral protocols, we can build a grassroots awareness model that does not rely on metro-based outreach and fits with India’s public health system.

Need for more awareness

The key in bridging the gap between diagnosed patients and silent sufferers of MS in India lies in awareness. With multiple sclerosis still being considered a rare disease, there are no proven studies that determine its root cause or cure. However, better management of symptoms through early diagnosis may lead to a better quality of life, also minimising the overall damage caused to the myelin sheath.

It is advisable to check with your neurologist and get screenings done to confirm your diagnosis, if you suspect you may have this autoimmune disease.

(Dr (Col) J. D. Mukherji is vice chairman and head, department of neurology, institute of neurosciences, Max Super Speciality Hospital, Saket, New Delhi.  jd.mukherji@maxhealthcare.com)