Amyotrophic lateral sclerosis 1
What are the first steps after an initial diagnosis of Amyotrophic Lateral Sclerosis?
There is currently no cure for amyotrophic lateral sclerosis (ALS) and treatment is targeted at relieving symptoms of the disease. Individuals with ALS will typically have a multi-disciplinary care team including a neurologist, pulmonologist, psychologist, social worker and nursing team. Speech, occupational, and physical therapy are also typical for palliative care. Individuals with familial ALS may also have a genetics team caring for them and their family. There is a medication called riluzole (Rilutek), which is FDA-approved for the treatment of ALS. Riluzole has the best results when started early in the course of the disease and appears to slow the progression of ALS. Riluzole cannot reverse existing motor neuron damage.
- National Institute of Neurological Disorders and Stroke
More Treatment Content
Is there a treatment for Amyotrophic Lateral Sclerosis?
No cure has been found for amyotrophic lateral sclerosis (ALS). The Food and Drug Administration (FDA) approved the drug riluzole (Rilutek) in 1995. Riluzole is believed to protect the motor neurons against damage and slow the progression of disease. It is suspected that this medication works by decreasing the levels of a chemical called glutamate in the brain. Clinical trials have shown that this drug can extend the life of someone with ALS by several months. It can also extend the time before ventilation support is needed for breathing.
New medications are emerging to help treat ALS. For information about clinical trials that may include drug therapy, visit clinicaltrials.gov.
Are there side effects to Riluzole?
There are drugs that interact with riluzole and some people may not be able to take the medication due to other health or medical issues. Individuals who are considering this medication should consult with their physician. Commonly reported side effects of riluzole include weakness and nausea. More serious side effects have been reported and include:
difficulty with breathing
difficulty with moving
excessive muscle tone
muscle pain or stiffness
muscle tension or tightness
pain in the joints
pounding in the ears
slow or fast heartbeat
bloating or swelling of the face, arms, hands, lower legs, or feet
bloody or cloudy urine
bluish lips or skin
burning while urinating
changes in skin color
dizziness, faintness, or lightheadedness when getting up suddenly from a lying or sitting position
cough producing mucus
difficult, burning, or painful urination
difficult or labored breathing
difficulty with swallowing
fast, pounding, or irregular heartbeat or pulse
frequent urge to urinate
general feeling of discomfort or illness
loss of appetite
low blood pressure or pulse
lower back or side pain
muscle aches and pains
rapid weight gain
shortness of breath
tightness in the chest
tingling of the hands or feet
unusual tiredness or weakness
unusual weight gain or loss
Continuing sores in the mouth
lack of coordination
lack of energy
mood or mental changes
muscle cramps, pain, or weakness
pain, tenderness, bluish color, or swelling of the foot or leg
redness, scaling, or peeling of the skin
swelling of the eyelids, mouth, lips, tongue, or throat
swelling of the face
yellow eyes or skin
- ALS association: Edward Kasarskis, MD, PhD
How long do I have to be treated for Amyotrophic Lateral Sclerosis?
Treatment for amyotrophic lateral sclerosis (ALS) should be continued throughout the patient’s lifetime. Riluzole may extend the life of patients with ALS and delay progression of symptoms. Other treatment such as physical therapy, speech therapy, and occupational therapy can help improve quality of life.
Are there other symptom specific treatments for Amyotrophic Lateral Sclerosis?
Physical therapy, speech therapy, and occupational therapy can help improve quality of life of individuals with amyotrophic lateral sclerosis (ALS). Gentle, low impact exercise such as walking, swimming, and stationary cycling can strengthen unaffected muscles and improve cardiovascular health. Nutritional support is also important for patients with ALS. Some patients can develop pain, depression, sleep disturbances, and constipation. Additional medication may be needed to treat these additional symptoms as they are seen.
How does someone with Amyotrophic Lateral Sclerosis prevent malnutrition?
Working with a nutritionist is important for people with amyotrophic lateral sclerosis (ALS). Speech therapists and nutritionists can help plan many small meals throughout the day that provide enough proper nourishment. It is important to avoid foods that are difficult to swallow. Suction devices can help remove excess fluids/saliva to prevent choking. Eventually a doctor may consider inserting a feeding tube into the stomach.
How does someone with Amyotrophic Lateral Sclerosis prevent breathing complications?
Nutritional support services and pulmonologists will work together to prevent swallowing and breathing complications.
Sleep assistance: The muscles that help with breathing will eventually begin to weaken in patients with amyotrophic lateral sclerosis (ALS). Machines can be used at night to help with breathing. Intermittent positive pressure ventilation (IPPV) or bi-level positive airway pressure (BIPAP) can be used to help breathe during sleep. These devices help inflate someone’s lungs by force.
Daytime assistance: The above mentioned devices can begin to be used full time. The NeuRx Diaphragm Pacing System is another option for some people with ALS, in which electrodes are implanted to cause the diaphragm (breathing muscle) to contract.
Full-time support: Mechanical ventilators (respirators) are machines that inflate and deflate a person’s lungs for them so they can breathe. A tube must go into the windpipe through the nose, mouth, or trachea (tracheostomy). This does not slow down the progression of ALS, but does allow patients to live longer.