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What should I discuss with my doctor if I have been diagnosed with ALS?

If you have been diagnosed with amyotrophic lateral sclerosis (ALS) you should discuss with your doctor how this illness manifests and what this will mean for your daily life going forward. ALS is a grave diagnosis, and no cure has yet been found. You may learn together with your doctor what resources are available to facilitate living with the limitations imposed by this disease.
Melanie Taylor, MD
Neurology
If you have been diagnosed with amyotrophic lateral sclerosis (ALS), you should discuss the following with your doctor:
  • What further symptoms will occur as the disease progresses? ALS was thought to just affect the muscles, just cause muscle weakness and not really have any other symptoms, but it is known now that there are other aspects. As the disease progresses, you should have conversations with your doctor long before further symptoms even occur so you will not be surprised by new symptoms.
  • What are the different domains that are going to be impacted by this disease, such as communication, nutrition and respiration?
  • How will ALS affect emotion, behavior, and relationships?
  • Discuss your concerns about whether you will be comfortable, if the disease is going to be painful, how you feel about things that can prolong life or not, and what a meaningful quality of life is for you.
Trinity Health is a Catholic health care organization that acts in accordance with the Catholic tradition and does not condone or support all practices covered in this site. In case of emergency call 911. This site is educational and not a substitute for professional medical advice, always seek the advice of a qualified healthcare provider.

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Important: This content reflects information from various individuals and organizations and may offer alternative or opposing points of view. It should not be used for medical advice, diagnosis or treatment. As always, you should consult with your healthcare provider about your specific health needs.