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ALS (Motor Neuron Disease): What to Expect, What Can Be Done, and Why the Right Care Team Changes Everything
Multidisciplinary ALS care at KIMS Hyderabad — neurology, respiratory, speech, nutrition, and palliative care in one coordinated team.
Motor Neuron Disease (MND) · Lou Gehrig's Disease
Neurodegenerative Disorders · Motor Neuron Diseases
Neurology · Respiratory Medicine · Speech Therapy · Nutrition · Palliative Care
Riluzole · Edaravone · Non-invasive ventilation · Speech and swallow therapy · PEG · Nutritional support · Physiotherapy
ALS is a progressive neurological condition in which both the upper motor neurons (brain to spinal cord) and lower motor neurons (spinal cord to muscles) gradually degenerate and die. This causes progressive weakness, muscle wasting, and eventually respiratory failure. The mind typically remains intact throughout. There is no cure, but multidisciplinary specialist care — as provided at KIMS Hyderabad — significantly extends survival and quality of life compared to non-specialist management.
- What it is
- Progressive degeneration of both upper and lower motor neurons. Causes weakness, wasting, and breathing failure. Mind remains intact. Also called MND or Lou Gehrig's Disease.
- Who it affects
- 2–3 people per 100,000. Average onset 50s–60s. Average survival 2–5 years from first symptoms, extended significantly with specialist MDT care.
- No cure — but team care matters
- Patients managed by a dedicated ALS multidisciplinary team live longer and maintain better function. KIMS provides the full team: neurology, respiratory, speech, nutrition, physiotherapy, palliative care.
- Most life-extending intervention
- Non-invasive ventilation (NIV) — mask-based breathing support — extends survival by approximately 7 months and significantly improves quality of life. Introduced at KIMS at the optimal time.
- Key medications
- Riluzole (slows progression by 2–3 months) · Edaravone (antioxidant, available for selected early cases) · Symptomatic medications for spasticity, excess saliva, emotional lability.
- When to seek urgent assessment
- Progressive limb weakness · slurred speech · effortful swallowing · foot drop · breathing difficulty when lying flat. Early assessment maximises the benefit of every intervention.
- Contact KIMS
- 040-44885000 · Urgent referrals accommodated as clinical priority · Emergency: 040-46324365
| Fact | Details |
|---|---|
| Medical classification | Motor neuron disease · Upper AND lower motor neuron degeneration simultaneously · TDP-43 protein accumulation in 95% of cases |
| Average survival | 2–5 years from first symptom onset · Significantly influenced by access to specialist multidisciplinary care |
| Onset types | Limb-onset (~70%): hand/foot weakness first · Bulbar-onset (~25%): speech/swallowing first · Respiratory onset (~5%) |
| Core medications | Riluzole · Edaravone (selected cases) · Baclofen (spasticity) · Atropine/scopolamine (secretions) · SSRI (emotional lability) |
| Critical intervention | Non-invasive ventilation (NIV) — extends survival ~7 months · Introduced by KIMS respiratory team at optimal timing |
| KIMS MDT team | Neurologist · Respiratory physician · Speech therapist · Dietitian · Physiotherapist · Occupational therapist · Palliative care |
| Genetic testing | C9orf72 · SOD1 · FUS · TDP-43 — available at KIMS for familial cases (5–10% of ALS) |
About This Condition
What Is ALS / Motor Neuron Disease?
Amyotrophic Lateral Sclerosis known as ALS, Motor Neuron Disease (MND), or Lou Gehrig's Disease is a progressive neurological condition in which the motor neurons of the brain and spinal cord gradually stop working and die. Motor neurons are the nerve cells responsible for sending signals from the brain to the muscles throughout the body. When they are lost, the muscles they control weaken, waste away, and eventually stop working.
The name "amyotrophic" comes from the Greek it means "no muscle nourishment." "Lateral sclerosis" refers to hardening of the lateral columns of the spinal cord, where the motor nerve fibres travel. The word "amyotrophic lateral sclerosis" describes, in anatomical terms, exactly what the disease does.
ALS affects both the upper motor neurons the nerve cells running from the brain down into the spinal cord and the lower motor neurons the nerve cells running from the spinal cord out to the muscles. This combination of upper and lower motor neuron damage, appearing and progressing simultaneously, is what distinguishes ALS from other motor neuron conditions and produces its characteristic pattern of symptoms.
ALS does not affect the senses sight, hearing, touch, and smell remain intact. It does not typically affect bladder or bowel control until very late stages. In most cases, the mind remains sharp throughout. But it relentlessly takes away physical function first in one limb or in the throat and mouth, then spreading progressively until the muscles of breathing are also affected.
There is currently no cure for ALS. We say that clearly, because families deserve honesty. But there is a great deal that can be done and the research is unambiguous that patients managed by a dedicated, experienced multidisciplinary team live longer and maintain a better quality of life than those who are not. Substantial variability in published survival estimates for ALS may partly be explained by differences in diagnostic journey and access to specialised care. At KIMS Neuroscience, Hyderabad, our multidisciplinary ALS team neurologist, respiratory physician, speech therapist, dietitian, physiotherapist, occupational therapist, and palliative care specialist works together around every patient from the time of diagnosis.
Book a Consultation
Speak directly with our specialist team. No referral required. Monday to Saturday.
040-44885000International enquiries: info@kimsneurosciences.comWhat Are the Symptoms of ALS?
ALS can begin in different places in the body, and where it begins shapes the early symptoms. This is one reason it is frequently misdiagnosed in the early stages, a dropped foot or a weak hand can have many causes, and ALS is not the first condition most doctors consider.
Limb-onset ALS — the most common presentation
In approximately 70% of cases, the first symptoms appear in a limb an arm or a leg. The pattern is characteristically asymmetric: it begins on one side, in one limb, and spreads from there.
• A hand or arm may become weak, making precise tasks — writing, buttoning a shirt, holding a cup progressively harder
• A foot may begin to drop catching on the floor when walking, causing trips and falls
• Muscle twitching (fasciculations) visible rippling under the skin — may be noticed, particularly in the affected limb
• Muscle cramping, particularly at night
• Gradual wasting (atrophy) of the affected muscles becomes visible over weeks to months
The weakness typically spreads: from one hand to the other arm, or from a foot up the same leg. It eventually involves both sides and multiple regions.
Bulbar-onset ALS — the throat and speech variant
In approximately 25–30% of cases, ALS begins not in the limbs but in the bulbar region the muscles of the throat, tongue, and mouth that control speech and swallowing.
• Speech gradually becomes slurred, slower, or harder to understand
• The voice may become nasal or strained
• Swallowing becomes effortful food or liquids may go "down the wrong way"
• Excessive saliva, or conversely dryness
• Emotional lability laughing or crying more easily than usual, sometimes in situations that do not match the emotion — caused by upper motor neuron involvement affecting emotional control circuits
Bulbar-onset ALS tends to progress faster than limb-onset ALS. The swallowing and breathing complications arise sooner. This makes early specialist involvement and early input from a speech and language therapist especially important.
Respiratory Symptoms
Eventually, ALS affects the muscles of breathing the diaphragm and the intercostal muscles between the ribs. When this happens, the first symptoms are often subtle and easily attributed to other causes:
• Shortness of breath when lying flat because the diaphragm has to work harder against gravity
• Waking at night feeling breathless or with headaches (a sign of elevated carbon dioxide from impaired breathing)
• Increasing fatigue during the day the body is working harder than normal to breathe
• A weaker cough unable to clear secretions effectively
Respiratory management introducing non-invasive ventilation (NIV) at the right time is one of the single most effective interventions available in ALS. It significantly extends life and improves quality of sleep and energy. This is managed by our respiratory medicine team at KIMS in close coordination with the neurology team.
Cognitive and Behavioural Symptoms — more common than most people know
This is the aspect of ALS that surprises most families and many clinicians. At least 50% of people with ALS experience significant changes in thinking and behaviour, and 15% go on to develop frontotemporal dementia. These changes are caused by the same underlying disease process affecting the frontal lobes, and they can include:
• Slowed thinking and difficulty concentrating
• Changes in personality, behaviour, or social judgment
• Difficulty with word-finding or verbal fluency
• In 15% of patients — a full FTD syndrome, with the personality and behavioural changes described in our Frontotemporal Dementia page
This is not widely known, and it matters for care planning. Families who notice behavioural or personality changes in a relative with ALS should raise it with the clinical team it changes how communication, consent, and care decisions are managed.
What Causes ALS?
In the majority of cases approximately 90–95% ALS is sporadic. It appears without any family history and without any identifiable genetic cause. Approximately 5–10% of affected individuals have a familial form of ALS, caused by an inherited gene mutation. The most common genetic causes include:
C9orf72
A hexanucleotide repeat expansion that is the most common genetic cause of both familial ALS and familial Frontotemporal Dementia. People carrying this mutation may develop ALS, FTD, or a combination of both.
SOD1
Mutations in the superoxide dismutase 1 gene account for approximately 20% of familial ALS cases.
FUS and TDP-43
Genes encoding RNA-binding proteins involved in gene expression regulation; mutations cause familial ALS.
For sporadic ALS the 90–95% with no family history the cause remains incompletely understood. Environmental exposures such as heavy metals, pesticides, military service, intense athletic activity, and certain viral infections have been proposed as possible contributing factors in epidemiological studies, but no single environmental cause has been definitively established. What is known is that in ALS, both upper and lower motor neurons accumulate abnormal TDP-43 protein aggregates in most cases a finding shared with FTD, which helps explain the biological and clinical overlap between the two conditions.
Diagnosis at KIMS
How Is ALS Diagnosed at KIMS?
ALS has no single definitive test. The diagnosis is made by a specialist neurologist based on a combination of clinical findings and electrophysiological testing and by systematically excluding other conditions that can mimic it. A number of potentially treatable conditions can produce weakness patterns that resemble ALS. Ruling these out is not a formality it is a moral obligation.
Neurological examination
The specialist examines for the hallmark combination of upper motor neuron signs increased reflexes, spasticity, Babinski sign and lower motor neuron signs muscle wasting, weakness, and fasciculations in the same regions. This combination, appearing without significant sensory involvement, strongly points to ALS.
EMG and nerve conduction studies — the most important diagnostic test
An EMG (electromyography) records the electrical activity of muscles at rest and during contraction. In ALS, the EMG shows characteristic abnormal spontaneous activity fibrillations and positive sharp waves, indicating denervated muscle fibres and reduced motor unit recruitment. Crucially, the EMG is typically abnormal in clinically unaffected regions as well, providing the evidence of widespread lower motor neuron involvement required for diagnosis by the Awaji criteria. Nerve conduction studies (NCS) measure the speed and amplitude of electrical signals along peripheral nerves. In ALS, nerve conduction velocities are typically normal until late in the disease — this is an important diagnostic feature that distinguishes ALS from demyelinating conditions such as CIDP, where conduction velocity is significantly reduced.
MRI brain and spine
MRI is not diagnostic for ALS but is essential for ruling out other causes of similar symptoms particularly compressive cervical myelopathy (a compressed spinal cord in the neck), which can closely mimic ALS with a combination of arm weakness and leg spasticity. A treatable compressive lesion must be excluded before an ALS diagnosis is confirmed.
Blood tests
A targeted set of blood tests rules out treatable mimics thyroid disease, vitamin deficiencies, inflammatory conditions, paraproteinaemia, and certain infections.
Genetic testing
For patients with a family history of ALS or FTD, or for those who wish to know whether a genetic cause is present, testing for C9orf72, SOD1, FUS, and TDP-43 mutations is available at KIMS Neuroscience. Genetic counselling is provided alongside testing.
The El Escorial / Awaji criteria
The diagnosis of ALS is made formally using internationally validated criteria currently the Awaji criteria that require evidence of combined upper and lower motor neuron degeneration across multiple body regions, progressing over time, without an alternative explanation. At KIMS, our neurologist applies these criteria systematically.
Treatment
How Is ALS Managed at KIMS and Why the Team Matters?
Let us be direct: we cannot cure ALS, and we cannot stop its progression. But we can do a great deal and what we do matters enormously to how long a person lives and how good that life is. The most important principle in ALS management is this: no specialist manages ALS well in isolation. The disease affects breathing, swallowing, communication, nutrition, movement, and mood simultaneously and managing each of these requires a different type of expertise working in coordination. This is why multidisciplinary ALS clinics have been shown in multiple studies to extend survival and improve quality of life compared to care from a single specialist. At KIMS Neuroscience, Hyderabad, every ALS patient is managed through a coordinated team.
The neurologist — overall coordination and medication
The neurologist leads the team, monitors disease progression, manages symptoms, prescribes the available medications, and coordinates the overall plan. Riluzole is the most established disease-modifying medication for ALS. It works by reducing toxic effects of glutamate, a chemical that, in ALS, accumulates and damages motor neurons. It modestly slows disease progression and has been shown to extend survival by approximately 2–3 months average. While the effect size sounds small, it is significant in a disease that progresses at the speed ALS does, it represents the only medication with proven disease-modifying properties that is widely available in India. It is taken as a tablet twice daily. Edaravone (Radicava) is a newer medication, an antioxidant that reduces oxidative stress in motor neurons. It has been approved in the USA and Japan and shown benefit in a specific subgroup of patients with early, rapidly progressing ALS. It is available in India through specialist centres and can be considered for appropriate patients at KIMS.
The respiratory physician — the most life-extending intervention
Respiratory management is arguably the most important clinical intervention in ALS, and it is the aspect of care most often delayed or absent outside specialist centres. Non-invasive ventilation (NIV) a mask-based breathing support system worn at night or during rest periods relieves breathing effort, reduces fatigue, improves energy during the day, improves sleep quality, reduces early-morning headaches caused by CO₂ retention during sleep, and has been shown to extend survival by an average of 7 months in studies considerably more benefit than riluzole alone. It is entirely non-invasive and does not involve any procedure or surgical intervention. Our team at KIMS monitors respiratory function at every visit using spirometry, checks for early signs of nocturnal hypoventilation, and introduces NIV at the optimal time.
The speech and language therapist
The speech therapist plays two vital roles in ALS care. Communication: As speech becomes progressively harder to produce, the therapist helps develop communication strategies slowing speech, using gestures, and eventually transitioning to augmentative and alternative communication (AAC) devices. These range from simple letter boards to sophisticated eye-gaze communication technology. Starting this process early gives the best outcomes. Swallowing: As bulbar symptoms progress, the risk of aspiration pneumonia increases. The speech therapist conducts regular swallowing assessments, advises on the safest food and liquid textures for each stage, and works with the dietitian to ensure adequate nutrition is maintained safely.
The dietitian — maintaining nutrition and body weight
Weight loss in ALS is common and significantly affects both strength and survival. People with ALS often cannot eat enough to maintain body weight because swallowing becomes effortful, food takes longer to eat, and fatigue reduces appetite. Maintaining body weight is one of the most practically impactful things that can be done to slow functional decline. Our dietitian works with each patient to maximise caloric intake through food modification, supplementation, and timely consideration of a feeding tube (PEG — percutaneous endoscopic gastrostomy). Placing a PEG tube at the right time is one of the most important decisions in ALS management.
The physiotherapist and occupational therapist
Physiotherapy focuses on maintaining strength and range of movement in the parts of the body not yet severely affected, managing spasticity, preventing joint contractures, and assessing mobility aids as the disease progresses. A targeted, gentle physiotherapy programme extends independent function and reduces complications. Occupational therapy helps adapt the home environment with raised toilet seats, grab rails, ramps, hospital beds, communication devices, and hoists. Our occupational therapist ensures the right aids are in place before they are urgently needed.
Palliative care — from diagnosis, not just at the end
Palliative care is not end-of-life care. It is specialist care focused on quality of life, symptom control, and the wellbeing of both the patient and their family and it is most effective when introduced early, alongside disease-directed management. Our palliative care team at KIMS helps patients and families navigate the emotional and practical aspects of ALS: having honest conversations about the future, understanding decisions ahead, planning for stages of disease, and ensuring that the patient’s own values and wishes remain central to all decisions about care.
When Should You Seek a Specialist Assessment for ALS?
Seek urgent neurological assessment at KIMS Neuroscience, Hyderabad if: One important note: Many of these symptoms are more commonly caused by conditions other than ALS, a compressed nerve in the neck, a peripheral neuropathy, or a treatable inflammatory condition. A specialist assessment at KIMS does not mean assuming the worst. It means getting an accurate answer as quickly as possible because if a treatable condition is found, treatment should start immediately, and if ALS is confirmed, specialist multidisciplinary care should begin without delay.
Appointments can be booked by calling 040-44885000. Urgent referrals are accommodated as a clinical priority.
A limb is progressively weakening without explanation particularly if accompanied by visible muscle twitching or wasting
Speech has become slurred or the voice has changed in character over weeks to months
Swallowing is becoming effortful food sticking, coughing after eating or drinking, or a feeling that liquids go 'down the wrong way'
A foot is dropping catching when walking, causing trips or falls
A hand is becoming clumsy in a progressive way dropping things, difficulty with fine tasks
Breathing feels harder than usual when lying flat, or you are waking with headaches
What to Expect — Living with ALS
The honest picture: ALS is a progressive condition that shortens life. The average survival from symptom onset is 2–5 years for classical ALS though there is significant variation. Bulbar-onset ALS tends to progress faster. Patients with predominantly upper motor neuron involvement, or with ALS beginning in a single limb, often have longer trajectories. Stephen Hawking perhaps the most famous person to have lived with ALS survived for 55 years after his diagnosis, though his case was exceptional.
What is not variable is this: patients who receive early, comprehensive, multidisciplinary ALS care consistently live longer and maintain a better quality of life than those who do not. Respiratory management, nutritional support, and symptom management are not peripheral concerns they are the interventions that directly affect how much time a person has and how good that time is.
The period between diagnosis and the loss of independent breathing and communication is the most valuable and important period to maximise. With the right team, this period can be longer than most families initially expect.
Planning is a central part of ALS care at KIMS. Advance care planning documenting the patient's wishes about future treatments, ventilation, and care preferences is begun early, in the patient's own words, while they are able to express them fully. This is not a pessimistic exercise. It is the most empowering thing a person with ALS can do ensuring that their own voice guides every future decision, even when that voice can no longer speak.
For families in Hyderabad and across Telangana: if someone you love has been diagnosed with ALS, the most important first step is to reach a specialist multidisciplinary team. In Hyderabad, that team is at KIMS Neuroscience.
Related Conditions
ALS belongs to a broader family of neurodegenerative and motor neuron disorders:
FAQs
Frequently Asked Questions
Has someone you love been diagnosed with ALS or Motor Neuron Disease?
The right team makes a real difference in ALS — to survival, to function, and to quality of life. At KIMS Neuroscience, Secunderabad, our multidisciplinary ALS programme brings together specialist neurology, respiratory care, speech therapy, nutritional support, and palliative care in one coordinated team. You do not need a referral letter. The sooner care begins, the more we can do.
International enquiries: info@kimsneurosciences.com