The ALS treatment center at the University of Nebraska Medical Center is a multidisciplinary
center for the evaluation and treatment of amyotrophic lateral sclerosis (ALS)
and related disorders. Professional personnel representing a variety of
interrelated disciplines care for the needs of each patient.
The purposes of the ALS treatment center are:
to establish a definitive diagnosis in patients referred for possible ALS;
once a diagnosis is established, to provide comprehensive care in a supportive and understanding environment, which
will enable the patient to attain the best possible level of neurological
functioning and the best possible quality of life.
What to Expect
People being seen for the first time interact primarily with a neurologist who is an
expert in neuromuscular diseases. The goal is to establish with as much certainty as possible
the specific diagnosis. Most people have been evaluated previously by one or more
neurologists, and often have been told that they may have ALS, or that they have a
neuromuscular disease. At our treatment center, they are given a comprehensive
neurological history and examination, and all of their records of past tests are
reviewed. Using that information, our neurologist orders various
tests as needed.
This may include studies of blood and urine, and radiologic
studies (X-rays, CT scans, and MRI scans). Most patients are scheduled to undergo electrodiagnostic
testing (EMG and nerve conduction studies) in our EMG laboratory. More involved testing,
such as a lumbar puncture (spinal tap), muscle biopsy or nerve biopsy may be scheduled.
After review of these tests by the neurologist, patients are then seen back, usually accompanied by
family and other caregivers, for a detailed discussion of the diagnosis with the neurologist.
If ALS is confirmed, information is provided and treatment options are reviewed including
established and experimental treatments. The ALS clinic coordinator is often present at that visit as well.
If not, a follow-up evaluation with her is then scheduled. The neurologist and coordinator work together
with the patient and family to establish a plan for treatment of the disease and management of symptoms.
People with ALS are seen, on average, once every three months in our
multidisciplinary treatment center. During these appointments, a patient and his or her
family remains in one examining room for about 3-4 hours while various members
of our team come in to perform evaluations. Precisely which team members see each person on any given day is individualized and is determined by the neurologist and coordinator, in consultation with the patient
and family. All patients receive measurements of their weight and breathing capacity, as well as evaluations by the neurologist and coordinator. They are then seen by some or all of the following team members: physical therapist, occupational therapist, speech therapist, nutritionist, communication specialist, wheelchair specialist, mental health specialist, social worker, pastoral care counselor and pulmonary medicine physician.
Interaction with Your Primary Care Physician
Patients must continue to see their own primary care physicians while utilizing the ALS treatment center's
specialized services. The primary care physician receives a written update from the neurologist
summarizing the ALS team's recommendations after each treatment center visit.
Your Liaison with The ALS Association Mid-America Chapter
addition to medical staff, a member of the Mid-America Chapter's
Care Services Team will be available to you at each visit to the
treatment center. This treatment center liaison can provide:
- Consultation as part of the clinical team
- Referrals to community resources, Chapter team members and Chapter programs as needed
- ALS informational materials as needed
- Assistance with comprehending medical terminology and instructions from clinical staff
Goals of the Treatment Center
Serve as a center for the diagnosis, treatment, and follow-up care of patients with amyotrophic lateral sclerosis (ALS)
Coordinate care with primary care physician
Provide specialized services for people living with ALS and related disorders
Maximize each person's function by utilizing a multidisciplinary approach
Provide each person with information concerning the disease process
Offer therapeutic drug trials
Keep patients and families abreast of research, including research in our own ALS Association Research Center