Penn State Hershey ALS Clinic and Research Center - About Us
The Penn State Hershey ALS Clinic at Penn State Milton S. Hershey 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 Clinic 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.
Our ALS clinic is the only service of its kind in central Pennsylvania, and was designated an ALS Association Certified Center of Excellence on October 19, 1998. We were re-certified on August 8, 2006 after passing a rigorous re-evaluation. About 70-80 new patients with ALS are diagnosed at the center annually, and about 180-200 are followed long-term at any given time.
What to Expect
Patients 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 of our new patients 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. Patients are given a comprehensive neurological history and examination, and past medical records 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 return, 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. An ALS nurse specialist is often present at that visit as well. If not, a follow-up evaluation with her is then scheduled. The neurologist and nurse work together with the patient and family to establish a plan for treatment of the disease and management of symptoms.
Patients with ALS are seen, on average, once every three months in our multidisciplinary clinic. During these appointments, a patient and his or her family remain in one examining room for about three to four hours while various members of our team perform evaluations. Precisely which team members see a patient on any given day depends on the issues the patient is having, and is determined by the neurologist and nurse, 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 nurse. Patients are then seen by some or all of the following team members: physical therapist, occupational therapist, speech therapist, nutritionist, respiratory therapist, mental health specialist, social worker, and pastoral care counselor.
Interaction with Your Primary Care Physician
Patients must continue to see their own primary care physicians while utilizing the ALS Clinic's specialized services. The primary care physician receives a written update from the neurologist summarizing the ALS team's recommendations after each clinic visit.
Goals of the Clinic
- Serve as a center for the diagnosis, treatment, and follow-up care of patients with ALS.
- Coordinate care with primary care physicians.
- Provide specialized services for patients with ALS and related disorders.
- Maximize patient function by utilizing a multidisciplinary approach.
- Provide each patient with information concerning the disease process.
- Offer therapeutic drug trials.
- Keep patients and families abreast of research, including research in our own Motor Neuron Disease Research Center.