Frequently Asked Questions About ALS

ALS, amyotrophic lateral sclerosis, is a nerve disease that gradually leads to a loss of muscle control and strength. There are several different types of ALS, but all lead to the same loss of muscle control. Read on to learn more about ALS.

Questions about ALS

Here are the most common questions about ALS as a disease.

What is ALS?

ALS, amyotrophic lateral sclerosis, is a nerve disease in which nerve cells die so that contact with the volitional muscles is destroyed and the person progressively loses the ability to move, talk and eventually even to breathe.

ALS is a common designation for a group of similar diseases. There are several different types of ALS.

What happens in the body with ALS?

The nerve cells in the brain, brain stem or spinal cord gradually die, and without them, the skeletal muscles of the body cannot function.

If a muscle does not receive nerve impulses, it will weaken and eventually atrophy (amyotrophy) and the dead nerve cells will be replaced by scar tissue (lateral sclerosis).

Who is affected by ALS?

Most people with ALS get sick between the ages of 45 and 75, but because there are different types of ALS, symptoms and disease course can vary.

About 10 percent of those affected have what is known as familial ALS, i.e. there is an altered genetic predisposition in the family.

In the other 90 percent of those affected, today we do not know the cause of the disease, it is so-called sporadic ALS. For this group, there is a proven association with, among other things, old age, male sex, smoking and relatives with nervous disorders.

Other factors that can cause increased risk include some types of heavy physical activity and damage to the brain, such as in athletes in contact sports.

By the age of 65, there are twice as many men as women with ALS. After the age of 70, there are about as many men as women who fall ill.

How many people suffer from ALS?

ALS in various forms affects between two to four people per 100,000 inhabitants each year. In Sweden, more than 300 people fall ill with ALS every year.

There is currently no indication that Sweden is more affected, compared to other countries in the Western world.

In recent years, there has been some increase in the number of people receiving ALS diagnosis. This may be due to more people becoming ill, but also better diagnostic methods, changed diagnostic criteria and increased knowledge about the relationship between ALS and other diseases.

What symptoms does ALS cause?

The first symptoms can come on suddenly but often start as a creeping weakness in the tongue or throat, or in a hand, arm or leg. After that, the weakness spreads to other will-driven muscles.

Symptoms from the muscles vary depending on how quickly the disease progresses and how the damage to the nervous system is distributed, which can manifest as varying degrees of stiffness in the affected muscles, muscle cramps, fumbling, impaired fine motor skills and muscle twitching.

Later in the course of the disease, ALS can produce emotional instability and, in some forms, signs of dementia with depersonalization and language disorders.

Common to all forms of ALS is that the respiratory muscles are eventually affected.

How is ALS diagnosed?

Because there are many diseases that have similar symptoms to ALS, it can be difficult to make the correct diagnosis, especially at the beginning of the disease.

There is not yet a specific test confirming the diagnosis of ALS, but often it is about excluding other, similar nervous diseases.

In addition to a neurological medical examination, analysis of blood and spinal fluid, magnetic camera examination and neurophysiological examinations that measure the function of nerve wires to the musculature of the arms and legs are done.

If there is a known heredity, a DNA analysis can confirm the diagnosis.

Why is there no medicine that cures ALS?

There is no treatment yet that cures ALS but several drugs have some slowing effect.

Research in ALS is focused on understanding how and why ALS occurs and to develop drugs that stop and slow the disease.

Why is research needed in ALS?

Medical research is funded only partially by government funds and most research projects need support from other external sources.

Unlike the major public diseases such as cardiovascular disease and cancer, there is a lack of major external donors focusing on ALS.

In order for the research to eventually lead to effective drugs, huge resources are required and it has been estimated that it will cost approximately SEK 20 billion to develop a new drug for ALS.

What happens in the body with ALS?

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The nerve cells in the brain, brain stem or spinal cord gradually die, and without them, the skeletal muscles of the body cannot function. If a muscle does not receive nerve impulses, it will weaken and eventually atrophy (amyotrophy) and the dead nerve cells will be replaced by scar tissue (lateral sclerosis).

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