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Lou Gehrig’s disease: these first symptoms that should alert you

It often develops in silence… but certain early symptoms of Lou Gehrig’s disease, also known as amyotrophic lateral sclerosis (ALS), can appear much sooner than most people realize. Recognizing them in time can make all the difference.

ALS remains one of the most feared neurological diseases. In France, nearly 6,000 people are currently living with the condition, and about 1,500 new cases are diagnosed every year. The average age of onset is between 65 and 75, but symptoms can sometimes emerge much earlier — often dismissed as stress, fatigue, or even aging.

The First Signs, Often Overlooked

Unlike strokes or other sudden neurological conditions, ALS begins subtly. Early symptoms may include:

  • Muscle weakness in one arm or leg, sometimes making it difficult to lift objects or climb stairs.
  • Painful cramps, particularly in the hands and feet.
  • Small, involuntary muscle twitches visible under the skin, often described as “fasciculations.”
  • Loss of strength or clumsiness, such as frequently dropping objects or stumbling without reason.
  • Difficulty speaking or swallowing, often linked to the “bulbar” form of the disease.

Because these signs can be mistaken for everyday fatigue, many patients go undiagnosed until the disease has advanced.

Sleep Disorders as a Warning Signal

Recent research from Inserm and the University of Strasbourg suggests sleep problems may appear well before the more obvious motor symptoms. Their 2024 study found that some patients experienced:

  • Reduced deep, restorative sleep.
  • Frequent nighttime waking without explanation.
  • Altered circadian rhythms, possibly linked to changes in neurons that regulate sleep.

These findings open new possibilities for earlier detection and patient care, pointing to sleep disturbances as potential early markers of ALS.

When Should You Worry?

Isolated, occasional symptoms are usually no cause for alarm. But when they become frequent or progressively worse, doctors recommend seeking medical advice. Warning signs include:

  • Asymmetrical weakness (one limb weaker than the other).
  • Shortness of breath or difficulty breathing during mild exertion.
  • Rapid, unexplained weight loss due to muscle atrophy.
  • Persistent swallowing difficulties or voice changes.

ALS can affect anyone, though it is more common after age 50. Early medical consultation is crucial.

A Difficult Diagnosis, But Crucial

There is no single test that confirms ALS. Doctors typically rely on:

  • Electromyograms (EMG) to study muscle activity.

  • Imaging scans to exclude other conditions.

  • Blood tests and, in some cases, genetic screening for hereditary forms.

Living With ALS

ALS is incurable, and life expectancy after onset is typically three to five years. Still, treatments and therapies can significantly improve quality of life. Patients often benefit from:

  • Medications such as riluzole, which slow disease progression.
  • Physiotherapy and speech therapy to maintain muscle and respiratory function.
  • Psychological support for both patients and families.

Roughly 10% of patients live beyond 10 years after diagnosis. But when symptoms go unnoticed for too long, life expectancy can drop sharply.

If you or a loved one shows signs described above, don’t wait — consult a healthcare professional promptly.

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