ALS Symptoms and Diagnosis

Amyotrophic lateral sclerosis (ALS) is a disease that usually starts slowly. The first signs can appear differently in each person, making it challenging to spot them early on.

At Banner Brain & Spine, our specialists understand the complexity of ALS. We use advanced testing and team-based care to identify symptoms, make an accurate diagnosis and guide you and your family toward next steps. 

How ALS symptoms change over time

ALS affects people differently, but symptoms usually follow a pattern. Health care specialists will help you address the severity and progression of your symptoms. ALS can be thought of as early, middle or late stage. This helps patients and families know what to expect.

Early stage

At first, symptoms usually affect one area. Most people can still live independently. ALS often begins as either limb onset (arms/legs) or bulbar onset (throat/speech).

Limb-onset ALS affects muscles in the arms, hands, legs or feet. Symptoms may include:

• Muscle weakness in one limb
• Muscle twitches and cramps
• Trouble writing or holding objects
• Fatigue and tasks that take more effort than before

Bulbar-onset ALS affects muscles that control speech, chewing and swallowing. Symptoms may include:

• Speech changes, including inability for the throat to form words properly
• Trouble swallowing liquids or choking

Middle stage

Symptoms start to spread to other muscle groups. You may need assistive devices, such as walkers or communication tools.

Symptoms may include:

• Falls or trouble climbing stairs or lifting objects
• Speech becomes harder to understand
• Trouble swallowing more foods, sometimes causing weight loss
• Shortness of breath during activity or at night
• Muscle stiffness and cramps
• Emotional changes, like laughing or crying unexpectedly

Late stage

Most voluntary muscles are affected in this stage.

You may need:

• Full use of mobility aids or help from caregivers
• Breathing support, such as noninvasive ventilation
• Feeding tubes or special diets for nutrition and safety
• Communication tools, like speech devices or eye-tracking systems

Cognitive and behavioral changes

Although ALS primarily affects the muscles, it can also impact brain function. Some people may notice problems with memory, decision-making or changes in behavior. In certain cases, ALS is linked to a condition called frontotemporal dementia. This type of dementia affects the part of the brain that controls judgment, problem-solving and social behavior.

Your care team at Banner Brain & Spine will help you prepare for each stage and adjust your care plan as your needs change. Learn more about ALS treatment and care. 

When to see a health care provider

See a provider if you notice:

• Ongoing muscle weakness that is getting worse
• Muscle twitches and cramps that don’t go away
• Slurred speech or frequent choking
• Shortness of breath, especially when lying down
• A family history of ALS combined with new symptoms

These signs do not always mean ALS. Other treatable conditions can cause similar problems. The only way to know for sure is through a medical exam. 

How ALS is diagnosed

There is no single test for ALS. Your provider will use a combination of medical history, physical exam and specialized tests.   

Tests may include:

• Neurological exam: Your provider will check reflexes, strength, coordination and signs of muscle wasting or stiffness.
• Magnetic resonance imaging (MRI): Scans the brain and spine to rule out spinal cord compression, brain lesions or other problems that look like ALS.
• Electromyography (EMG) and nerve conduction studies (NCS): Measure electrical activity in your muscles and nerves to find nerve damage. 
• Blood tests: Check for thyroid issues, vitamin deficiencies or autoimmune conditions.
• Lumbar puncture (spinal tap): A small sample of fluid from your spine may be tested to rule out infections or inflammation.
• Breathing tests: Measure how well your lungs and breathing muscles work. 
• Speech and swallowing tests: Identify early problems and help plan therapy.
• Genetic testing: All patients who are diagnosed with ALS should meet with a genetic counselor and discuss if genetic testing is needed for you or your family.  This is important because there is a treatment available for one rare form of ALS. 

Conditions that look like ALS

Some other conditions may have similar symptoms. Your care team may check for:

• Multifocal motor neuropathy (MMN), a treatable nerve disorder
• Spinal cord problems, like “pinched” nerves (radiculopathy) or cervical myelopathy
• Myasthenia gravis, a condition that causes fatigable muscle weakness
• Inclusion body myositis (IBM), a progressive muscle disease
• Primary lateral sclerosis (PLS) or spinal muscular atrophy (SMA), related motor neuron diseases
• Metabolic issues, like thyroid disorders or vitamin deficiencies
• Other conditions of the nervous system, based on your examination and history

What to expect after diagnosis

Hearing the words “you have ALS” is life changing. At Banner Brain & Spine, we want to be here to help you with this diagnosis. 

After diagnosis, patients meet with a multidisciplinary team that may include neurologists, therapists, dietitians, respiratory therapists and social workers. The focus is on maintaining independence, safety and quality of life for as long as possible. 

You may discuss:

• Medicine to manage symptoms
• Breathing and nutrition support
• Mobility aids and communication tools
• Physical, occupational and speech therapy
• Emotional and caregiver support
• Clinical trials and research opportunities
• Advance care planning

Since treatment and care are complex and deserve their own focus, we invite you to learn more about treatment and care for ALS.

How Banner Brain & Spine can help

If you’re concerned about ALS or have already been diagnosed, Banner Brain & Spine is here for you. We offer:

• Accurate diagnosis with advanced testing and experienced specialists
• Coordinated, team-based care that adapts as your needs change
• Access to supportive therapies, from physical therapy to speech-language support
• Connection to clinical trials and the latest research opportunities
• Guidance for you and your family as you navigate decisions

You don’t have to face ALS alone. Schedule an appointment with a Banner Health specialist today.