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Patients with ALS, a rare neurological disease, can feel overwhelmed when diagnosed with the disease. This article outlines questions that you can ask your doctor to get a deeper understanding of the disease and your treatment options.

Patients with amyotrophic lateral sclerosis (ALS), a rare neurological disease, are characterized by a loss of motor neurons (nerve cells that control voluntary muscle movement).

If your family doctor suspects you have ALS, then you will be referred to a neurologist or an an ALS specialist.  It can be intimidating and nerve-racking to walk into the first appointment. Therefore, it is important to be fully prepared.

One good idea is to compile a list of questions for the doctor before you go. While you can get a lot of information online, your doctor can provide further clarification and a more in-depth understanding on things that might be difficult to grasp.

These are the following questions you should ask your doctor during your appointment

  1. What is ALS and what causes it? Ask the doctor to provide you with a brief overview of what ALS is and why it develops. While the cause of sporadic ALS is not known, the doctor can explain what genes might be contributing to cases of genetic or familial ALS.
  2. What are the symptoms of ALS? Chances are, the reason you are seeing the doctor is because you have already presented with some of the symptoms of the disease. However, as ALS is a progressive disease, it is important to know what other symptoms you are likely to develop as time goes on. Knowing which symptoms you will eventually develop will ensure you are not caught by surprise and can prepare ahead of time to manage those symptoms.
  3. Does ALS affect thinking and the mind? It is important to know whether ALS might affect your cognitive thinking abilities. By recognizing that your thinking might be affected, you will be able to identify and pinpoint when your thinking changes and be able to seek help for it.
  4. What tests do I need to get done? ALS is a difficult disease to diagnose as there is not one single diagnostic test for ALS. Therefore, you will have to go through several different types of tests, including imaging and genetic tests, to determine whether you have ALS or a different type of disease.
  5. How should I prepare for these tests? Usually, you don’t need to do anything to prepare but it is important to know in case some tests require you to be fasting beforehand.
  6. What are the next steps? This is an important question as this will decide your course of treatment for the next many years. Next steps will include starting treatment on one of the FDA-approved drugs, perhaps starting a clinical trial, starting occupational or speech therapy and so forth. You will likely need a multidisciplinary team.
  7. How quickly will my disease progress? The disease course is very variable among individuals. However, if you are diagnosed with ALS then it is best to plan early and make arrangements in case you do progress quickly. In the case of genetic ALS, there might be some information that the doctor can inform you regarding average life expectancy and disease progression.

These are the important questions you should ask your physician when you go see them.

Here are some other questions you may want to ask in addition to the ones above

  1. Is ALS a painful disease?
  2. Is ALS a contagious or transmissible disease?
  3. Does brain damage lead to the development of ALS?
  4. When does ALS normally occur?
  5. What are my symptoms that lead you to suspect I have ALS?
  6. What are other diseases that can explain my symptoms?
  7. Should I get a second opinion?
  8. Should I call to get the test results or will someone else contact me?
  9. What is the life expectancy for patients with ALS?
  10. Should I get my children or other family members tested for ALS?
  11. What kind of quality of life will I have with this disease?
  12. Will my insurance cover my medications and other treatments that I will have to get?
  13. How much of a financial burden will this disease be on me and my family?
  14. What other types of specialists or professionals will I need to see?
  15. How will you monitor my condition?
  16. Do you recommend I get physical or occupational therapy? Should I start these types of therapies earlier on in the disease course?
  17. What are the types of research that are being conducted in this field?
  18. Where can I find the latest research and information on clinical trials?
  19. Are there are any clinical trials in this area that I can participate in?
  20. Do you recommend I participate in any clinical trials?
  21. What are the types of drugs I will be prescribed?
  22. What are the common side effects of these drugs?
  23. What should I do in case my symptoms get worse?
  24. What are some support groups that my family members and I can attend?
  25. What are some websites where I can get more information?

You may not want to ask all of these questions, but just a subset of them. Ask enough questions so that you have an idea about what ALS is, how it will progress, how it can be treated and what your options are.

  • Borasio, Gian Domenico, Richard Sloan, and Dieter E. Pongratz. "Breaking the news in amyotrophic lateral sclerosis." Journal of the neurological sciences 160 (1998): S127-S133.
  • Silverstein, Marc D., et al. "Amyotrophic lateral sclerosis and life-sustaining therapy: patients' desires for information, participation in decision making, and life-sustaining therapy." Mayo Clinic Proceedings. Vol. 66. No. 9. Elsevier, 1991.
  • O'Brien, Mary R., et al. "From symptom onset to a diagnosis of amyotrophic lateral sclerosis/motor neuron disease (ALS/MND): experiences of people with ALS/MND and family carers–a qualitative study." Amyotrophic lateral sclerosis 12.2 (2011): 97-104.
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