About ALS

Symptoms

Signs and symptoms of ALS vary greatly from person to person, depending on which neurons are affected. Signs and symptoms might include:

• Difficulty walking or doing normal daily activities
• Tripping and falling
• Weakness in your leg, feet or ankles
• Hand weakness or clumsiness
• Slurred speech or trouble swallowing
• Muscle cramps and twitching in your arms, shoulders and tongue
• Inappropriate crying, laughing or yawning
• Cognitive and behavioral changes

ALS often starts in the hands, feet or limbs, and then spreads to other parts of your body. As the disease advances and nerve cells are destroyed, your muscles get weaker. This eventually affects chewing, swallowing, speaking and breathing.

There's generally no pain in the early stages of ALS, and pain is uncommon in the later stages. ALS doesn't usually affect your bladder control or your senses.

Causes

ALS affects the nerve cells that control voluntary muscle movements such as walking and talking (motor neurons). ALS causes the motor neurons to gradually deteriorate, and then die. Motor neurons extend from the brain to the spinal cord to muscles throughout the body. When motor neurons are damaged, they stop sending messages to the muscles, so the muscles can't function.

ALS is inherited in 5% to 10% of people. For the rest, the cause isn't known.

Researchers continue to study possible causes of ALS. Most theories center on a complex interaction between genetic and environmental factors.

Risk factors

Established risk factors for ALS include:

• Heredity - Five to 10 percent of the people with ALS inherited it (familial ALS). In most people with familial ALS, their children have a 50-50 chance of developing the disease.
• Age - ALS risk increases with age, and is most common between the ages of 40 and the mid-60s.
• Sex - Before the age of 65, slightly more men than women develop ALS. This sex difference disappears after age 70.
• Genetics - Some studies examining the entire human genome found many similarities in the genetic variations of people with familial ALS and some people with noninherited ALS. These genetic variations might make people more susceptible to ALS.

Environmental factors, such as the following, might trigger ALS.

• Smoking - Smoking is the only likely environmental risk factor for ALS. The risk seems to be greatest for women, particularly after menopause.
• Environmental toxin exposure - Some evidence suggests that exposure to lead or other substances in the workplace or at home might be linked to ALS. Much study has been done, but no single agent or chemical has been consistently associated with ALS.
• Military service - Studies indicate that people who have served in the military are at higher risk of ALS. It's unclear what about military service might trigger the development of ALS. It might include exposure to certain metals or chemicals, traumatic injuries, viral infections, and intense exertion.

Complications

As the disease progresses, ALS causes complications, such as:

Breathing problems

Over time, ALS paralyzes the muscles you use to breathe. You might need a device to help you breathe at night, similar to what someone with sleep apnea might wear. For example, you may be given continuous positive airway pressure (CPAP) or bilevel positive airway pressure (BiPAP) to assist with your breathing at night.

Some people with advanced ALS choose to have a tracheostomy — a surgically created hole at the front of the neck leading to the windpipe (trachea) — for full-time use of a respirator that inflates and deflates their lungs.

The most common cause of death for people with ALS is respiratory failure. On average, death occurs within three to five years after symptoms begin. However, some people with ALS live 10 or more years.

Speaking problems

Most people with ALS develop trouble speaking. This usually starts as occasional, mild slurring of words, but becomes more severe. Speech eventually becomes difficult for others to understand, and people with ALS often rely on other communication technologies to communicate.

Eating problems

People with ALS can develop malnutrition and dehydration from damage to the muscles that control swallowing. They are also at higher risk of getting food, liquids or saliva into the lungs, which can cause pneumonia. A feeding tube can reduce these risks and ensure proper hydration and nutrition.

Dementia

Some people with ALS have problems with memory and decision-making, and some are eventually diagnosed with a form of dementia called frontotemporal dementia.

FAQ

Is there a cure?

Currently there is no cure for ALS, however, medication and therapy can slow ALS, reduce discomfort, and improve quality of life.

Can ALS be prevented?

There are no preventive steps known at this time. It's rare, affecting about 5.2 people per 100,000 in the U.S. population, according to the National ALS Registry.

Has anyone ever recovered from ALS?

ALS is a debilitating, devastating disease from which no one has ever fully recovered.

What are the 3 types of ALS?

• Sporadic - approximately 90% cases of ALS are called “sporadic,” meaning the cause or causes of the disease are unknown.
• Familial - in which there is a family history of the disease. Familial ALS constitutes 5 to 10% of all cases of ALS. There are a number of different types of familial ALS. They are known as ALS1, ALS2, and so on.
• Guamanian - cases observed in Guam and the Trust Territories of the Pacific with extremely high incidence rate.

Do early ALS symptoms come and go?

ALS symptoms are progressive meaning the symptoms get worse over time and often develop very quickly. That said there are some cases in which symptoms, such as difficulty swallowing, can get better for a period of time.

Can ALS go into remission?

Difficult to say. Each person with ALS experiences a different proportion of upper and lower motor neurons that die. This results in symptoms that vary from person to person. The disease progresses, affecting more nerve cells as time goes on.

Is there any hope for ALS patients?

Yes, there is a palpable sense of hope in ALS science circles these days. And that optimism very much includes a fingers-crossed suspicion that treatment advances are just up ahead on the research horizon.

How fast does ALS progress?

Over the course of months to years, in the majority of situations, the weakness spreads throughout the body until all of the person's limbs are paralysed. For each person, this progression occurs at a steady rate. However, the overall rate of progression can still be different from one patient to the next.

Do PALS feel pain?

Pain in ALS most frequently involves musculoskeletal pain that occurs in the back, legs, arms, shoulder, and neck. Although the etiology of this pain is not well understood, it is known that musculoskeletal pain in ALS develops secondary to muscle atrophy and decreased muscle tone.

Does exercise help with ALS?

Exercise may have many benefits for ALS patients, including reducing depression and improving strength and stamina.

Does ALS affect memory?

Most experts believe that ALS usually does not affect a person's mental processes. In most people, neither cognitive processes (such as thinking, learning, memory, and comprehension) nor behavior is affected.

Can stem cells cure ALS?

Currently, there is no known cure for ALS, but stem cell-based therapies may give patients, their doctors and scientists hope in dealing with this condition.

Can coconut oil help with ALS?

Coconut oil has plausible mechanisms for use in ALS involving raising ketone bodies and lipid levels. Ketogenic and high fat diets may have helped slow motor neuron loss in small ALS animal studies with many flaws.

What is life like with ALS?

Most people live for at least 3 years after their diagnosis. Some people live up to 10 years. As new medicines and treatments for symptoms become available, people will live longer and longer with the disease. Your health care team can help you understand what to expect.