What to expect if you visit the Providence ALS Center

Please note: All people attending the Providence ALS Center must be referred by their primary care physician or a consulting neurologist or specialist.

First visit: When you come to the Providence ALS Center for the first time, you will interact primarily with a neurologist who is an expert in ALS and neuromuscular diseases. The goal is to establish your specific diagnosis with as much certainty as possible.

Many people attending the center for the first time have been previously evaluated by one or more neurologists. If you’re like them, you may have been told that you may have ALS, or that you have a neuromuscular disease. At our clinic, you are given a comprehensive examination, a complete neurological history is taken, and all of your records of past tests are reviewed.

Using this information, our neurologist may order various tests as needed. This may include studies of your blood and urine, and radiologic studies (x-rays, CT scans, and MRI scans). You’ll likely also be scheduled for electro-diagnostic testing (EMG and nerve conduction studies). More involved testing, such as a lumbar puncture (spinal tap), muscle biopsy, or nerve biopsy may be scheduled.

After the neurologist reviews these tests, you will be seen again in a follow-up appointment, usually accompanied by your family and other loved ones, for a detailed discussion of your diagnosis with the neurologist. If ALS is confirmed, you’ll be provided with information, including a review of established and experimental treatment options. The ALS Center Nurse Manager may be present at that visit as well. If not, you’ll be scheduled for a a follow-up evaluation with the nurse manager. The neurologist and nurse will work together with you and your family to establish a plan to treat ALS and manage your symptoms.

Follow -up visits: You’ll likely be seen in our multidisciplinary clinic about once every 3 months, on average. During these appointments, you and your family remain in one exam room for about 3-4 hours while various members of our team come in to perform evaluations. Precisely which team members see you on any given day depends on the type of ALS-related problems you are having, and is determined by your neurologist and nurse, in consultation with you and your family.

You will receive measurements of your weight and breathing capacity, as well as evaluations by the neurologist and nurse. You will then seen by some or all of the following team members: physical therapist, occupational therapist, speech language pathologist, nutritionist, communication specialist, and a social worker.

After each visit to the Providence ALS Center, you will receive a plan with recommendations from the multidisciplinary team. The ALS Center nurse or social worker will follow up with you to support your in implementing those treatment recommendations.