Newly Diagnosed

Information for Newly Diagnosed ALS Patients and Their Families

How certain is my diagnosis?
What should I expect for the future?

Receiving a diagnosis of ALS can be an overwhelming experience. You may have received information during your clinical visit that was hard to process at that time, or which you now have more questions about. The information below and elsewhere on this website may help you begin to understand more about living with ALS, and how to plan for changes in your future. We also encourage you to make a list of your questions and to return soon for another visit so that we can provide you with the answers and information you need.

How certain is my diagnosis?

There is no single test that can confirm the diagnosis. Your neurologist considered several different factors in determining your diagnosis, including your symptoms, history, and test results. Taken all together, they point to ALS as the right diagnosis. But we are always supportive of the desire to obtain a second opinion, if desired. Our staff can help you find another neurologist who could help.

What should I expect for the future?

There is no one answer to this question. The disease progresses at different rates in different people, and we cannot predict how fast it will progress for any specific person. In general, we believe that the course of the disease to date is somewhat predictive of what the future holds. If your disease has progressed slowly until now, then it is likely that it will continue to do so. Over time, you will notice more muscle weakness, and weakness spreading to other muscles. This will make it more difficult to carry out activities of daily living, such as dressing, washing, and feeding. ALS causes loss of the ability to walk, and eventually makes it difficult to speak and swallow. Some people with ALS will experience some loss of their cognitive (thinking) abilities, although this is not true for everyone. The average survival after diagnosis is three to five years, but may range from as little as six months to 20 years or more. We do not yet understand all the factors involved in those differences in survival, and can't predict survival for any specific person.

Are there any treatments for my disease?

There is one drug, riluzole, approved for treatment of ALS, which increases average survival by several months. We also know that maintaining adequate nutrition, and non-invasive ventilation (to support the breathing muscles) is essential in prolonging survival. Much research is underway to find other disease-slowing treatments.

There are also a large number of treatments that improve symptoms, prevent complications, and help maintain quality of life for people with ALS at every stage of the disease. More information on these can be found here. Our staff will discuss each of these with you.

Will my insurance cover the costs of my care?

Each person's insurance plan may differ in detail. Most insurance plans do cover many of the costs of ALS care. Our staff can help you learn what your plan will cover, and how to talk about these issues with your insurer. We also have other ways in which we can help you cover the costs of treatment, if you need financial help.

Should I stop/start exercising?

Moderate exercise should be part of every person's health regimen. We don't yet know whether exercise specifically benefits people with ALS. There is no evidence that strenuous exercise can help, and there are risks of muscle damage from overexertion. We recommend a program of aerobic exercise to maintain cardiovascular health, while avoiding overdoing it.

Early on, most people find they can continue much of the exercise they enjoy, whether swimming, walking, bike riding, or gardening. If you don't currently exercise regularly, it is a good time to start. Activities such as running, which may increase the risk of falling, may no longer be safe as your symptoms progress. Our physical therapy staff will work with you to develop a safe, healthy, and enjoyable exercise program.

What research is being done to stop ALS? Can I get involved?

Research into the causes and treatment of ALS is the focus of many of the best scientists in the United States and throughout the world. There are dozens of top-quality research laboratories working hard to find the best approaches to develop therapies. Enormous strides have been made in recent years, and significant new discoveries are announced every year. You can learn more about ALS research, and how you can get involved, here.

For more information on any topic, and to learn more about our team, our services, and how we can help, use the links on the left hand side of the page.

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