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What is Bulbar Onset ALS?

Amyotrophic lateral sclerosis, or ALS, is a fatal motor neuron disease that targets nerve cells in the spinal cord and brain. The early symptoms of ALS typically appear in the limbs, known as Limb Onset ALS, and can show difficulty with simple, everyday tasks. However, what makes ALS so difficult to diagnose and treat, is that it looks differently for everyone. Approximately 25% to 30% of people diagnosed with ALS first notice their symptoms manifesting as issues with speech or swallowing — this phenomenon is referred to as Bulbar Onset ALS.

What are the early symptoms of Bulbar Onset ALS?

Those experiencing Bulbar Onset ALS may show early symptoms affecting speech such as:

  • Changes in voice
  • Harsh or strained voice
  • Feelings of breathlessness
  • Poor articulation
  • Decrease in range of pitch

Other symptoms include:

  • Spasms in muscles of the jaw, face, throat and tongue
  • Inappropriate outbursts of laughing or crying
  • Twitching in the muscles of the tongue
  • Difficulty chewing or swallowing

How is Bulbar Onset ALS Diagnosed?

There is no Bulbar Onset ALS specific diagnostic test and the disease is typically diagnosed by ruling out other conditions. Patients with Bulbar Onset ALS are often referred to a head and neck surgeon and speech pathologist for evaluation and eventually, symptom management. Doctors use physical examination to assess swallowing, lip and tongue strength and speech tests in addition to other neurological tests, to diagnose Bulbar Onset ALS. ALS is not experienced in the same way, and the disease progression varies greatly among all those diagnosed. Most people live 3-5 years after their first signs of disease. However, those diagnosed with Bulbar Onset ALS typically see faster disease progression.

There will never be a single, magic silver bullet to treat and cure ALS. We urgently need multiple treatment options to support the ALS community and give every person living with ALS a fighting chance against this disease. Augie’s Quest to Cure ALS is dedicated to changing the experience of people living with ALS by raising the funds and awareness urgently needed to advance cutting-edge research, fast-track effective treatments, and ultimately, find a cure for this devastating disease. Today, there is real hope, like never before.


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