How long can you have ALS without knowing it?

Amyotrophic lateral sclerosis, or ALS, is a fatal motor neuron disease that targets nerve cells in the spinal cord and brain. Approximately 30,000 Americans are living with ALS, with a new case diagnosed every 90 minutes. Currently, there is no cure for ALS — making it one of the most devastating disorders to affect the function of muscles and nerves.  

What are the Symptoms of ALS? 

The initial symptoms of ALS can vary from person to person. For many, the onset of the disease is so subtle that the symptoms are often overlooked. However, as symptoms begin to develop into more obvious muscle weaknesses and/or atrophy, physicians are more likely to suspect ALS in their patients. 

It is extremely difficult to diagnose ALS. In fact, it’s often diagnosed months or even years after symptoms begin, by ruling out other diseases. It’s crucial to seek a neurologist with experience in ALS and/or neuromuscular diseases if you or someone if you or a loved one are showing symptoms. 

Some of the earliest and most common signs of ALS are: 

• Difficulty walking or doing normal, day-to-day activities
• Muscle twitching in the arms, shoulders, legs or tongue (also known as fasciculations)
• Muscle cramps, especially in the hands and feet
• Slow or slurred speech, known as bulbar-onset ALS
• Trouble chewing, swallowing and/or breathing,
• Muscle weakness in an arm, a leg, neck or diaphragm 
• Inappropriate crying, laughing or yawning

Similar to the symptoms, the rate at which ALS progresses varies by each individual patient. Although not all individuals may experience the same symptoms or patterns of progression, almost all patients are likely to develop progressive muscle weakness and eventually paralysis. 

What Causes ALS? 

Although the exact cause of this disease is unknown, recent research suggests that there are many complex factors that contribute to motor neuron failure in the body.  Between 5-10 percent of ALS cases are genetic, and the remaining are sporadic, meaning the cause is unknown.  Researchers continue to study the potential causes of ALS, and most theories center on a complex interaction between genetic and environmental factors.