What do I do now?

close-up of a doctor and patient talking

Being diagnosed with ALS can seem overwhelming. It is completely natural to feel shocked, scared, sad, angry, and a long list of other emotions. Along with those emotions, you must take steps to deal with the diagnosis and begin living life with ALS. But what should you do, and where should you start?

If you haven’t already done so, it’s always a good idea to get a second opinion when dealing with a serious diagnosis like ALS. ALS is not an easy disease to diagnose, and it’s been estimated that as many as 15% of ALS cases are misdiagnosed. Because ALS is a rather rare disease, many doctors have limited or no experience diagnosing ALS. When getting a second opinion, try to find a specialist who has experience working with ALS patients. Some clinics focus exclusively on serving ALS patients; you can click here to find the ALS clinic or center closest to you.

Knowledge is power. The more you can learn about ALS — from its history to its vocabulary and current research — the better you’ll be able to make decisions regarding care, therapy, and planning. Joining a support group can help you deal with the emotional struggles that come with an ALS diagnosis. It also allows you to connect with and get advice from other people who have ALS, and who may have more experience with the disease.

Though ALS currently has no cure, that doesn’t mean that there is no hope. In at least a few cases, people with ALS live for decades after their diagnosis. Some such patients find that the disease eventually stabilizes; though the symptoms they’ve experienced remain, no new symptoms develop. Regardless of how quickly the disease progresses, you still have much to live for and can make the most of the time you have.

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