What Do I Do now?

close-up of a doctor and patient talking

Being diagnosed with ALS can seem overwhelming. It’s completely natural to feel shocked, scared, sad, angry and a long list of other emotions. Along with allowing yourself to feel all of those emotions, it’s important to take steps to accept and learn about your diagnosis and begin living life with ALS.

But what should you do? Where should you start?

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 it.

When getting a second opinion, try to find a medical specialist who has experience working with ALS patients. Some clinics focus exclusively on serving ALS patients. You can click here to find an 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 and plans about care, therapy, finances and more.

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 are living with ALS, and who may have more experience with the disease.

ALS currently has no cure, but there is still a lot of hope. In some cases, people with ALS live for decades after their diagnosis.

These people find that the disease eventually stabilizes. The symptoms they’ve experienced remain, but 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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