ALS Diagnosis

ALS can be a difficult disease to diagnose. There is no one definitive test for ALS, which means your neurologist may need to run a series of tests to rule out other diseases and conditions before arriving at a definitive diagnosis.

The diagnosis process is different for everyone. Some people get diagnosed early by the first neurologist they see. Others end up seeing multiple doctors, or getting diagnosed with something else first, before receiving an accurate ALS diagnosis a year or more after their first symptoms arise.

It is important to be proactive and get an accurate diagnosis as soon as possible because early support and intervention can help you live longer and have a better quality of life.

How is ALS diagnosed?

In order to confirm or rule out an ALS diagnosis, neurologists need to gather information from a variety of sources. During your exam, the neurologist will review your medical history, ask about the progression of your symptoms, and test your reflexes, muscle strength, and other responses. Common tests include an EMG, nerve conduction study, MRI of the brain and spinal cord, and blood and urine tests.

Though relatively rare, people can get misdiagnosed with ALS when, in fact, the symptoms are being caused by a different disease or condition. More common, however, is that people who do have ALS are first misdiagnosed with something else, which can result in unnecessary surgeries and delay.

How can I get an accurate and timely diagnosis?

​If you are worried you might be showing early signs of ALS, you can start by seeing your primary doctor or scheduling an appointment with a local neurologist. If ALS seems like a possibility, make an appointment with a neurologist who specializes in ALS.

​Ask your general neurologist or local ALS Network care manager for recommendations. Find out if you will need a referral in order to schedule an appointment.

What should I do if I am diagnosed with ALS?

If you receive an ALS diagnosis, it is reasonable to seek a second opinion. Though relatively rare, misdiagnoses can happen. Minimizing doubts about the cause of your symptoms can help you begin to plan and receive appropriate care and support.

Once you feel that your ALS diagnosis is accurate, schedule an appointment at an ALS clinic in your area. In addition to improving quality of life, studies have shown that attending an ALS clinic on a regular basis can extend your life by one year or more.

We also strongly recommend that you register with a local ALS Network care manager. They can help answer your questions, provide support, connect you to resources, and guide you throughout the ALS journey.

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