May 30 is World MS Day. Multiple Sclerosis (MS) is a chronic central nervous system (CNS) disease which affects the brain, spinal cord, and optic nerves. Even in the absence of symptoms, the disease is continuously active (causing brain damage) from early stages of MS.
World MS day is a worldwide stage, for MS patients, to tell their story. Patients from India have the opportunity to share their personal experience in Hindi or English by visiting www.worldmsday.org
MS is relatively rare in India
In recent times, MS prevalence rates in India have been revised from 1 case in every lakh to 3 cases/100,000 people – compare this to US, where MS occurs in 1 per 1000 people. Regionally speaking, higher MS incidence rates of 4.15 and 3.2 were reported from north-west India (≥ 15° N latitude) and south India (≤15° N latitude), respectively. A significantly higher MS prevalence, 26 per 100,000, is recorded in the Parsi community. This anomaly is explained by the fact that Parsis (Zorastrians) are originally from the Iranian province of Pars, which has a high prevalence of MS. These observations match worldwide MS trends of higher prevalence rates in populations that are from temperate or cold climates, Caucasian ancestry, female (2:1), young (20-40 years) and affluent. A typical MS patient is a 20-40 years old female.
MS is an autoimmune, demyelinating, neurodegenerative disorder
MS is an autoimmune disease because the MS patient’s immune system (body’s defence against infection) attacks a part of its own body – the nerve cell myelin sheath. The nervous system consists of billions of neurons (nerve cells) which relay messages within the brain and between the brain and other body parts.
In a normal nervous system, nerves (bundles of nerve cells) pass messages amongst themselves at superfast speed. The axon (long arm of a nerve cell) is covered by the myelin sheath (multi-layered bands) with small gaps in between. The nerve impulses, that is, chemical signals jump from gap-to-gap and rapidly spread the messages to surrounding nerve cells.
MS is neurodegenerative because the damaged myelin sheath and oligodendrocytes (cells that produce myelin) delay communication between nerve cells resulting in inefficient functioning of various body systems.
Demyelinating (without myelin sheath) nerve cells occurs in multiple areas of the brain and nervous system. Damaged portions of the axon undergo sclerosis (develop hardened scars). A noteworthy feature of MS is the remissions (remyelination with improved symptoms) and relapses (further demyelination with worsened symptoms) cycle that occur over time.
The exact cause of MS is unclear
MS does not result from any particular lifestyle choice and is not contagious. A link between MS and autoimmune diseases and smoking has been reported. Several other viral and bacterial infections e.g., Epstein-Barr virus (EBV) infection and childhood mumps, are considered as MS triggers. Since vitamin D is important for proper immune function, low levels of this vitamin are considered as a potential cause of MS. Environmentally, strong associations exist between MS and geography (temperate and cold zones) and demographics (age, gender, and ethnicity).
Genetics play a role in MS, though not hereditary, as there is increased risk of MS incidence among siblings. Scientists are investigating which genes are common within families affected by MS or in populations with high MS incidence rates.
Signs and symptoms of MS are variable
MS symptoms are variable, unpredictable, and appear in different patterns. Most common patterns are relapsing/remitting (symptoms come and go) and chronic progressive (symptoms continuously worsens). Depending on which part of the nervous system develops demyelination, the condition affects corresponding body systems. The first MS symptom, in nearly 50% patients, appears as double or blurred vision caused by optic neuritis (demyelination of nerves connected to the eyes). Loss of coordination (30% patients) and speech difficulties also occur frequently. Other common symptoms include numbness, tingling, pins-and-needles sensation, tiredness, dizziness, limb weakness, pain and loss of touch, urinary control, memory and thinking ability.
MRI is the chief diagnostic tool for MS
MRI (magnetic resonance imaging) scans of over 90% of MS patients show the presence of lesions (demyelinated and scarred areas). MRI scans along with the patient’s medical history plus neurological exam confirms MS diagnosis. Spinal taps (check spinal fluid for abnormalities) and EEG (measures brain electrical activity) help rule out other autoimmune conditions or infections (HIV or Lyme disease).
High disease variability is a challenge for patients and neurologists
It is difficult to predict the development course of MS which may be asymptomatic, mild or severe. In severe cases the patients lose their ability to write, speak or walk which drastically affects their daily lives. In a recent publication, Dr ES Krishnamoorthy (a Chennai-based Clinical Neurologist) commented that access plus cost of diagnostic tests and treatment are a hurdle for MS patients. For example, a MS patient in Chennai pays Rs. 70,000 monthly for drugs that require alternate day injections. In addition, there is minimal to zero insurance or disability compensation for patients who are unable to work as a result of their weakened physical, mental and emotional abilities.
There is no cure for MS
MS treatment options include disease-modifying drugs methylprednisolone, interferons (Avonex, Betaseron), Copaxone and Rebif that provide symptom relief and slowdown the disease progression to prevent relapses. Counselling, physical and occupational therapy help to cope with movement and behavioural symptoms. MS is not fatal but complications arising from a weak immune system, such as pneumonia, lower life expectancy by ten years in MS patients.
Richard A. Rudick (US-based MS expert) during a Feb 2012 presentation, at The TS Srinivasan Institute, observed that MS prevalence in India is probably underestimated because of a lack of awareness amongst patients and neurologists. Dr. Rudick, also declared that MS treatment had progressed beyond the ABCR drugs (Avonex, Betaseron and Copaxone and Rebif) to personalised medicine such that several drug combinations could be used to possibly completely block multiple sclerosis disease (MS) activity.
MS Society of India (MSSI) supports MS patients and caregivers
MSSI (http://www.mssocietyindia.org/), found in 9 cities, offers useful advice, reading material, research updates, and community support. MSSI also organizes and conducts health camps, workshops, social events and fundraisers across the country throughout the year. To end with, here’s a heart-warming picture of a 36 year old MS patient, Jigna Chanpura, who recently completed a 21km Half Marathon at a MSSI event.