Amyotrophic Lateral Sclerosis (also called ALS, or Lou Gehrig's disease) is a type of neuromuscular disorder. This means that it affects the nerves in your body that control voluntary movement of the muscles in your arms, legs, and hands.
ALS is often a very emotional diagnosis. It is a progressive disease, which means it gets worse over time. While there is not yet a cure for ALS, new FDA-approved medications can improve symptom management and slow disease progression.
MedStar Health is an ALS Association Certified Center and a recognized Care Center by the Muscular Dystrophy Association. With our neuromuscular team, you and your family will get the latest, most advanced ALS care to reduce the impact of the disease.
Three key facts about ALS
- About 90% of ALS cases have no clear cause and the rest may be genetic.
- Famous people who lived with ALS include Stephen Hawking (theoretical physicist) and Stephen Hillenburg (creator of “Spongebob Squarepants”).
- Specialized, team-based ALS care can improve quality of life.
Early signs and symptoms of 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.
“Be curious, and however difficult life may seem, there is always something you can do, and succeed at. It matters that you don't just give up.”
- Stephen Hawking
How is ALS diagnosed?
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.
Treatments for ALS
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.
Our providers
Location: Change location Enter your location
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James Lyle Bicksel, MD
Neurology & Memory And Cognitive Disorders Neurology
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Duane O Campbell, MD
Neurology
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Tracy Vu Fulton, MD
Neurology
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Changsoo Hahm, MD
Neurology
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Noushin Jazebi, MD
Neuromuscular Medicine & Neurology
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Kathleen Beatrice Johnson, CRNP, ANP-BC
Memory And Cognitive Disorders Neurology & Neurology
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Edina Komlodi-Pasztor, MD, PhD
Neuro-Oncology & Neurology
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Douglas Joseph Mayson, MD
Neurology
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Samuel Bennett Miller, MD
Neurology
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Fernando Luis Pagan, MD
Movement Disorders Neurology & Neurology
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Pranusha Pinna, DO
Neurology
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Kajal Samish Shah, MD
Sleep Medicine & Neurology
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Bahareh Sianati, MD
Neurology
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Bilaal Sirdar, MD
Neurology
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Amanda Grace Tinsley, MD
Neurology
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Yasar A. Torres Yaghi, MD
Neurology
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