Symptoms and Diagnosis
The initial symptoms of ALS can be quite varied in different people. One person may have trouble grasping a pen or lifting a coffee cup, while another person may experience a change in vocal pitch when speaking. ALS is typically a disease that involves a gradual onset.
The rate at which ALS progresses can be quite variable from one person to another. Although the mean survival time with ALS is three to five years, many people live five, ten or more years. Symptoms can begin in the muscles that control speech and swallowing or in the hands, arms, legs or feet. Not all people with ALS experience the same symptoms or the same sequences or patterns of progression. However, progressive muscle weakness and paralysis are universally experienced.
Gradual onset, painless, progressive muscle weakness is the most common initial symptom in ALS. Other early symptoms vary but can include tripping, dropping things, abnormal fatigue of the arms and/or legs, slurred speech, muscle cramps and twitches, and/or uncontrollable periods of laughing or crying.
When the breathing muscles become affected, ultimately, people with the disease may need noninvasive or invasive ventilatory support to assist with breathing.
The five senses (sight, touch, hearing, taste and smell) are not affected by ALS. For many people, muscles of the eyes and bladder are generally not affected either.
Diagnosing ALS poses a considerable challenge. No single examination or method definitively confirms the presence of ALS. Instead, a diagnosis hinges on a thorough clinical assessment and an array of diagnostic evaluations, primarily aimed at excluding conditions that imitate ALS. An exhaustive diagnostic evaluation typically encompasses the majority, if not all, of the subsequent procedures:
- A thorough neurological examination
- Electrodiagnostic tests including electomyography (EMG) and nerve conduction velocity (NCV)
- Blood and urine studies including high-resolution serum protein electrophoresis, thyroid and parathyroid hormone levels, and 24-hour urine collection for heavy metals
- Spinal tap
- X-rays, including magnetic resonance imaging (MRI)
- Myelogram of cervical spine
- Muscle and/or nerve biopsy
For more information on the importance of a second opinion, click here.
Not every physician requires all of these tests. It varies from neurologist to neurologist. ALS United Greater New York recommends seeking a second opinion when undergoing diagnosis. Click here for a listing of our partner clinics. Click here for a listing of our local partner clinics.