SYMPTOMSDIAGNOSTICS&
SYMPTOMSDIAGNOSTICS&

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 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.

Symptoms

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, 10 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 will need permanent ventilatory support to assist with breathing.

Since ALS attacks only motor neurons, the sense of sight, touch, hearing, taste and smell are not affected. For many people, muscles of the eyes and bladder are generally not affected.

Diagnosis

ALS is a difficult disease to diagnose. There is no one test or procedure to ultimately establish the diagnosis of ALS. It is through a clinical examination and series of diagnostic tests, often ruling out other diseases that mimic ALS, that a diagnosis can be established. A comprehensive diagnostic workup includes most, if not all, of the following procedures:

  • 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
  • A thorough neurological examination

These tests are done at the discretion of the physician, usually based on the results of other diagnostic tests and the physical examination. There are several diseases that have some of the same symptoms as ALS, and most of these conditions are treatable. It is for this reason that it is recommended that a person diagnosed with ALS seek a second opinion from an ALS expert – someone who diagnoses and treats many ALS patients and has training in this medical specialty.

The progression of ALS varies significantly from one person to another. Responding to each person's individual needs, our organization is available to provide vital services and reliable information through strategic community partnerships.

Register with us to access free, personalized services—available to all individuals living with ALS, regardless of insurance coverage or immigration status.

Once registered, you’ll meet with our Care Services Team, who will work closely with you to identify your current needs and plan for future support. Research shows that people with ALS who receive comprehensive, individualized care often experience a significantly improved quality of life.

For more information, email
support@alsunitedri.org.• ALS Multidisciplinary Clinic• Equipment Loans• Transportation Program• Support Groups• Support and Resources for Children• Financial Assistance ProgramsPROGRAMS & SERVICESALS Rhode Island Services
5,600

people in the US diagnosed per year

90%

of cases have no genetic cause

40-70

age range most people develop ALS