Symptoms and Stages of Amyotrophic Lateral Sclerosis (ALS)

Discover the warning signs of amyotrophic lateral sclerosis (ALS), the disease’s first symptoms, and how those symptoms progress over time.

By Ability Central

23 January, 2024

 A man in a motorized wheelchair and a woman with her arm in a sling leading a charity walk for ALS research down a city street

Amyotrophic lateral sclerosis (ALS) is a progressive neurological disease with no cure. To help you understand more about the condition, this article will address all of the following:

  • What are the symptoms of amyotrophic lateral sclerosis (ALS)?
  • What are the early warning signs of ALS?
  • What do advancing ALS symptoms look like?
  • What happens in the final stages of ALS? 
  • What should I expect from my doctor when seeking an ALS diagnosis?
  • Where can I get more information about ALS?

 

What are the symptoms of amyotrophic lateral sclerosis (ALS)?

Amyotrophic lateral sclerosis, also known as ALS or Lou Gehrig’s disease, is a degenerative disease in which the body’s nerve cells begin to break down. Motor neurons, the nerve cells in the brain and spinal cord that control breathing and conscious muscle control, degenerate and die.

This starts as weakness in one or more parts of the body that progresses to widespread paralysis and function loss. Because ALS symptoms worsen over time, these symptoms can change as the disease progresses. Eventually, people with ALS lose the ability to start, maintain, and control everyday movements like walking, talking, chewing, and breathing. 

ALS is often fatal after 3 to 5 years of rapid progression.

 

What are the early warning signs of ALS?

The earliest signs of ALS are often related to muscle weakness. This might be weakness in a limb that develops over days or weeks before spreading to other limbs. Sometimes, the weakness appears in mouth and throat muscles, causing slurred speech or difficulty swallowing.

The parts of the body most commonly affected first by ALS are the arms, legs, shoulders, or tongue. Early symptoms include:

  • Muscle twitches 
  • Muscle cramps
  • Tight or stiff muscles
  • Muscle weakness
  • Slurred and nasal speech
  • Difficulty chewing or swallowing

 

What do advancing ALS symptoms look like? 

As ALS progresses, symptoms move to other parts of the body. Generally, symptoms that already existed become much worse: for example, a weakened arm becomes paralyzed, or a clumsy stride turns into an inability to walk. 

Progression of physical ALS symptoms might include difficulty with:

  • Persistent fatigue
  • Balance or standing
  • Walking without tripping or falling
  • Holding things without dropping or breaking them
  • Poor fine motor skills, like tying shoes or opening a jar
  • Getting in and out of bed

ALS symptoms also progress in the mouth and throat, like:

  • Dysphagia, difficulty chewing or swallowing
  • Sialorrhea, or drooling
  • Dysarthria, or difficulty speaking and forming words
  • Dyspnea, or difficulty breathing.

Worsening ALS symptoms can also damage someone’s mental health. These symptoms might include:

  • Pseudobulbar syndrome, a neurological condition characterized by uncontrollable laughter, crying, or other emotional reactions that aren’t appropriate to the situation
  • Anxiety
  • Depression
  • Difficulty with language and decision-making

While most people with ALS retain full intellectual and cognitive ability, in very rare cases, some people with ALS develop a type of dementia called frontotemporal dementia (FTD-ALS). Like other rapid-onset dementia disorders, FTD-ALS causes issues with memory and communication. 

 

What happens in the final stages of ALS?

When ALS reaches the end of its progression, extremely serious health concerns appear. Paralysis is not uncommon, with many people with ALS restricted to wheelchairs or hospital beds by the end of their lives. 

The most dangerous ALS symptoms affect breathing. Someone in the end stages of ALS may lose the ability to cough or clear their throat if they choke. Most people with ALS eventually lose the ability to breathe on their own, relying instead on a ventilator.

For these reasons, respiratory failure is the most common cause of death in people with ALS. 

For information about life expectancy and care plans for people with ALS, see Amyotrophic Lateral Sclerosis (ALS): Financial Planning and Long-term Support.

 

What should I expect from my doctor when seeking an ALS diagnosis?

There is no single test or procedure to confirm ALS. Instead, doctors use a variety of tests to assess symptoms, rule out other neurological conditions, and make a final diagnosis. Tests may include:

  • A physical exam 
  • A neurologic exam of your reflexes and muscle strength
  • Electromyography (EMG) 
  • A nerve conduction study (NCS) 
  • Magnetic resonance imaging (MRI) 
  • Blood and urine tests 
  • A muscle biopsy 

As time goes on, doctors repeat these tests to track the progression of ALS symptoms and, in some cases, make interventions that can improve quality of life for someone with ALS.

According to the ALS Association, a second opinion is always a good idea. In 10-15% of cases, people initially diagnosed with ALS have another disease or condition. On the other hand, 40% of people with ALS are initially diagnosed with something else, and only receive an ALS diagnosis after extensive testing.

 

Where can I get more information about amyotrophic lateral sclerosis?

Ability Central has multiple resources to learn more about ALS, including:

Article Type:
Learning