Understanding the Symptoms of ALS, or Lou Gehrig’s Disease


ALS (amyotrophic lateral sclerosis), also known as Lou Gehrig’s disease, can show up differently in people based on things like sex, age, and race. Your sex can also play a role in what type of ALS you get and how quickly it gets worse. 

ALS symptoms in women can differ from those in men, depending on what caused your disease. Knowing about these differences may help you spot your symptoms and start treatment sooner so you can possibly slow down progression of the disease. And it could help researchers better target treatments.

ALS can be sporadic (we don’t know the cause) or familial (caused by your genes). About 90% to 95% of people with ALS have the sporadic type. Early symptoms of sporadic ALS can be different in women and men. Being in the military, being exposed to toxins, and smoking may increase your risk for ALS.

Symptoms can start as a weak feeling in your hands or feet. The disease attacks the brain cells that control a lot of your muscle movement. Eventually, it weakens your diaphragm, a muscle needed for your lungs to work. Most people with ALS die from respiratory failure. ALS still has no cure.

Early ALS Symptoms

Signs of ALS can appear gradually.

You may notice a funny feeling in your hand that makes it harder to grip the steering wheel. Or you may start to slur your words before any other symptoms show up. Each person with the disease has different symptoms, especially at first.

Some common early symptoms include:

  • Stumbling
  • A hard time holding items with your hands
  • Slurred speech
  • Swallowing problems
  • Muscle cramps
  • Worsening posture
  • A hard time holding your head up
  • Muscle stiffness

ALS may affect only one hand at first. Or you may have problems in just one leg, making it hard to walk in a straight line. ALS affects upper and lower motor neurons, which are nerves in your brain that control your muscles. Your symptoms can differ based on which types of neurons your disease affects first. ALS weakens and destroys your neurons so they stop communicating with your muscles.

Over time, the disease affects almost all of the muscles you control. But doesn’t harm all muscles and organs in the body. The heart and bladder, for instance, usually stay healthy.

ALS usually occurs in one of two main ways: limb (spinal) onset or bulbar onset. 

Limb Onset

Symptoms start in your arms or legs. Also called spinal ALS, limb onset tends to worsen more slowly than bulbar onset. 

In your arms, it may cause:

  • Weakness in your hands
  • Stiffness or cramping in your arms or hands
  • Reduced use of your fingers (fumbling or dropping items, having a hard time turning keys)

In your legs, it may cause:

  • Tripping 
  • Stumbling
  • Awkwardness when you walk or run
  • Foot drop (when your foot stomps on the ground instead of rolling as you stride)

Some limb onset symptoms can show whether the disease is affecting your lower or upper motor neurons first.

If your lower motor neurons are being affected first, you may have:

  • Involuntary muscle twitching (called fasciculations)
  • Weakness and cramps in muscles
  • Decreased muscle tone and/or atrophy (thinning muscle mass)
  • Weakened reflexes
  • A hard time swallowing
  • Feeling short of breath when you’re resting
  • A hard time speaking

If your upper motor neurons are being damaged first, you may have:

  • Stiff or rigid muscles
  • Increased or hyperactive reflexes
  • Less control over laughing or crying

Bulbar Onset

It’s less common for ALS to begin this way. It affects your brainstem, which is the lower area of your brain that connects to your spinal cord. Specifically, it impacts the corticobulbar area that controls muscles in your neck, face, and head. Bulbar onset usually worsens more quickly than limb onset.

Symptoms can include:

  • Slurred speech
  • Swallowing problems
  • Changes in your voice
  • Muscle spasms in your face or throat
  • Jerking in your jaw
  • Twitching in your tongue that you can’t control 

No matter where your symptoms start, they’ll move on to other parts of your body. Most people with ALS have bulbar onset symptoms at later stages of the disease.

Advanced Symptoms

As ALS gets worse, more of your muscles and activities are affected. You may have:

  • Weaker muscles
  • Less muscle mass
  • More serious chewing and swallowing problems
  • A hard time being understood when you speak
  • Trouble breathing

Symptoms of ALS in Women

ALS symptoms in women can be different than in men. With sporadic ALS, men are more likely to have limb onset and women are more likely to have bulbar onset. But there’s not much difference in survival rates between men and women with ALS.

ALS is more likely to occur in men, but as people get older, it happens equally in men and women. 

Researchers aren’t sure why there are differences based on sex. They think it could have to do with how our bodies respond to toxins. Research looking at sex hormones suggests that women may have some protection from developing ALS. 

Ways to Manage Symptoms of ALS

During the early stages of the disease, some forms of treatment might help give you a better quality of life. They include:

Physical therapy: It focuses mostly on larger muscles used for standing, walking, balancing, reaching, and so on.

Occupational therapy: It helps with smaller muscle activities, such as buttoning a shirt, using a fork or spoon, or brushing your teeth.

Speech therapy: It can help you speak a little more clearly when you lose control of the muscles of the tongue. Speech therapists can help you manage swallowing problems, too.

In addition to these therapies, certain tools and new technologies can also assist those with ALS. Some of them include:

  • Motorized wheelchairs
  • Continuous positive airway pressure (CPAP) to help with breathing during sleep
  • Speech-generating devices to help those with slurred speech
  • Computers with eye-recognition software that help a person communicate when speech and hand control are lost

At more advanced stages, you may need a machine to keep your lungs working. If chewing and swallowing become too hard, even with small bites or a liquid diet, you may need a feeding tube.

When to See a Doctor

A muscle cramp in your leg or a weak feeling in your hand once in a while isn’t usually enough to send you to the doctor. But if those feelings last for days or weeks, you should make an appointment.

Pay attention to changes in how the muscles in your arms and legs feel. Listen to friends or family if they point out a change in your speech or how you walk.

You can start by seeing your regular doctor. If you think that the weakness or tingling is nerve-related, see a neurologist. This is a doctor who specializes in diseases affecting the brain and nervous system.

Some early ALS symptoms are the same as those of other less serious conditions.

Many of these, such as carpal tunnel syndrome (a problem with the nerves in your wrist), can be treated successfully. To know for sure, don’t hesitate to describe your symptoms to a doctor. The earlier you know what’s causing your symptoms, the sooner you can start to treat them.