When’s the right time to get genetic testing?

There are some benefits to moving forward with genetic testing quickly: The sooner you get your test results, the sooner you can start planning with your ALS care team. For example, once you get your results, you could find out that you’re eligible for a clinical trial that’s starting soon. Based on your results, your doctor may be able to recommend a more effective way to manage your ALS symptoms. Anything you choose to try may be more effective now, before your ALS progresses.

On the other hand, genetic testing is a big decision. If you’ve recently found out that you have ALS, you may want to take some time to adjust to your new diagnosis before thinking about genetic testing. Genetic testing can be expensive, too — so it might take time to find a doctor or counselor you trust and save up for testing or make sure your health insurance will cover it.

Some people with ALS find that family members pressure them to get genetic testing or try to influence their decision. But at the end of the day, there’s no right or wrong answer. You can get genetic testing done at any time that feels right to you.

I’ve done genetic testing before. Could I benefit from getting tested again?

Over the past few years, researchers have learned a lot about genes linked to ALS. That means if you had genetic testing years ago, you might be able to learn more about your ALS by getting tested again. If possible, get a copy of your old genetic testing results. Then ask your doctor or counselor if retesting is right for you.