What to Expect After an ALS Diagnosis
Amyotrophic lateral sclerosis, or ALS, is a difficult disease to diagnose, because many other conditions have similar symptoms. There is no test for ALS; doctors diagnose it by analyzing symptoms and ruling out other diseases. ALS develops gradually at first. People may notice they are dropping things more often, losing their balance, or slurring words as they develop early symptoms. Eventually, people with ALS become paralyzed and die, usually from respiratory failure.
As many as 15% of patients tested for ALS get a false-positive. That means they are told they have ALS, but their symptoms are due to some other disease or condition. Up to 40% of ALS patients are initially diagnosed incorrectly before ALS is confirmed.
There is no specific test to confirm ALS, but the doctor, usually a neurologist, will observe your symptoms and ask you questions, including what you’ve noticed about changes in your physical abilities and what daily activities may be harder to perform. If they suspect ALS, they can begin to rule out other conditions that might be causing the symptoms with tests including:
- Electromyogram (EMG) evaluates the electrical activity of muscles.
- Nerve Conduction Study measures impulses from nerves to muscles in different parts of the body. This test can determine if you have nerve damage or certain muscle or nerve diseases.
Your doctor may also order:
- MRI to look for lesions on the spinal cord that may cause symptoms similar to ALS
- Spinal tap to obtain spinal fluid for laboratory testing
- Muscle biopsy to see if the cause is muscle-related rather than nerve disease
It often takes up to a year or more to confirm a diagnosis of ALS.
Due to the complex and serious nature of the disease, if you are given a diagnosis of ALS, strongly consider getting a second opinion with a physician who specializes in motor neuron diseases.
A diagnosis of ALS can be overwhelming. It’s important that you take the time to understand the disease and to make sure you are comfortable with the doctor who’ll be leading your treatment. Look for a provider who has extensive experience treating the disease.
ALS care is often “integrated” which means that you’ll have a team of medical professionals overseeing your care to help you maintain function as long as possible. A neurologist oversees the care team that typically include a physical therapist, occupational therapist, respiratory therapist, and social or psychological counseling.
Understanding ALS Progression
ALS does not follow a specific course as it progresses. People with ALS experience different patterns and the sequence of symptoms can vary. Sometimes people will have periods during which the disease does not progress, though it will resume at some point. Rarely, people have “reversals” in which their function improves for a period of time, usually no more than several months.
About half the people with ALS live at least 3 years, 25% live 5 years or longer, and as many as 1 in 10 will live more than 10 years.
Managing ALS Symptoms
Your doctor can prescribe medication, either Riluzole or Radicava, which may slow the progression of the disease by several months. They can also give Nuedexta, which helps reduce a symptom that some people with ALS have called pseudobulbar affect, which is spontaneous, uncontrolled laughing or crying.
In addition to medication, there are other ways to help manage the symptoms of ALS. Physical and occupational therapy can help keep you active and adjust to differences in capabilities. Respiratory therapists can help with breathing difficulties. Emotional and psychological support play an important role in helping people with ALS, as well as their loved ones.
There have been significant scientific findings in recent years that have given researchers insight into the genetic profile of ALS and have led to experimental medicines which are being tested. Some of these experimental trials are being “fast-tracked” to see if the medications are effective in helping slow or stop the progression of ALS.