Amyotrophic Lateral Sclerosis (ALS)

People with ALS are typically diagnosed between age 40-70. The disease has a gradual onset, so the early signs may be subtle:

• Muscle twitching, cramping, stiffness, or weakness
• Difficulty grasping objects
• Fatigue
• Slurred speech

Symptoms can appear in any order, and the speed of progression varies for each person. The signs become more noticeable as the disease progresses:

• Difficulty chewing and swallowing (dysphagia)
• Speech impairments (dysarthria)
• Breathing disruptions (dyspnea)
• Digestive challenges

ALS attacks only motor neurons, which means people with ALS retain brain function and all five senses. For unknown reasons, the muscles controlling the eyes and bladder are usually spared.

Over time, some patients lose their ability to walk, speak, use their hands and arms, or eat and breathe unassisted. The life expectancy with ALS varies among patients, from two to 10 years or longer. Getting team-based care early in the disease can improve symptom management and help patients live longer, higher quality lives.

There is no single physical exam, test, or genetic screening to diagnose ALS. Because it is such a complex condition, the process of confirming a diagnosis takes time. About 90% of ALS cases have no clear cause.

Other diseases and conditions can mimic the symptoms of ALS. Your neuromuscular specialist will recommend a variety of tests to rule out other causes.

Electromyogram (EMG) and nerve conduction study

An EMG measures the electrical activity in muscles, at rest and during contraction. Nerve conduction measures the electrical impulses from the nerves to the muscles. These tests are usually done in the same visit.

Other diagnostic tests

Your care team might use blood and urine analysis, MRI, or a lumbar puncture (spinal tap) to rule out other causes.

The ALS Clinic at MedStar Health provides personalized care and a coordinated care experience with renowned neuromuscular specialists. You’ll build relationships with your care team, which will include experts from many different specialties, including respiratory, nutrition, mobility, orthotics, and mental health care.

While there is not yet a cure or reversal treatment for ALS, we offer advanced therapies that can ease symptoms and slow progression of the disease. Research shows that a team-based, comprehensive treatment plan is the best way to manage ALS.

Medication

Your treatment plan may include advanced, FDA-approved medications that can be tailored to your specific symptoms. Neurologists can prescribe three medications that slow disease progression for some patients:

• Riluzole (Rilutek)
• Edaravone (Radicava)
• Sodium phenylbutyrate and taurursodiol (Relyvrio)

We also offer tofersen (Qalsody) for patients with SOD1 ALS, the second-most common variance in genetic ALS. Tofersen, an injection given through an IV in the spine, is not widely available at most centers.

Physical and occupational therapy

While nothing can prevent or repair ALS nerve damage, physical therapists, occupational therapists, and speech-language pathologists will help you and your family adapt as your condition progresses. Experts in our neurorehabilitation team will work closely with your neuromuscular specialist as an integral part of your MedStar Health care team.

The goals you create with your therapists are an important part of maintaining your independence. In addition to physical exercises, you and your family will learn how to move safely around your home and use assistive devices.

Home health care

As ALS progresses, families often need help at home to provide the best care. The MedStar Health Home Care team offers expert support, including:

• Activities of daily living, such as bathing, eating, and self-care
• Fall prevention
• Medication management
• Pain management
• Occupational, physical, and speech-language therapy

Your MedStar Health care team will be by your side every step of the way to provide the latest treatment options and reduce the impact of ALS for you and your family.