ALS Clinic at the Penn Medicine Neuroscience Center
About the ALS Clinic
 
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General Description
The ALS Center at the Penn Comprehensive Neuroscience Center at Pennsylvania Hospital 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 Center are:

  1. To establish a definitive diagnosis in patients referred for possible ALS;
  2. To provide comprehensive care, once a diagnosis is established, 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 Center was designated a certified ALS Association Center on June 3, 2002. Our neurologists see patients for evaluations on Wednesdays and our multidisciplinary clinic operates every Thursday.

What to Expect on Your First Visit
Initial evaluation is conducted by 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.

At our clinic, a comprehensive neurological history is taken and an examination is performed; medical records and results of previous tests are reviewed. Further work-up is arranged as needed. This may include studies of blood and urine, and radiologic studies (X-rays, CT scans, and MRI scans). Some patients may need to be scheduled for electrodiagnostic testing (electromyography and nerve conduction studies) at our facility. Occasionally, further testing, such as a lumbar puncture (spinal tap), muscle biopsy, or nerve biopsy may be needed. Results of all tests and the physician’s diagnostic impression are discussed in detail with patients and families.

If the diagnosis of ALS is confirmed, information about the pathophysiology and clinical aspects of the disease is provided. Treatment options aimed at both symptom management and the underlying disease are reviewed. If appropriate, experimental therapies may be discussed. The neurologist and clinic team members will work together with the patient and family to establish a plan for treatment of the disease and management of symptoms.

Follow-up Visits
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 remains in one examining room for about three to four hours while various members of our team come in to perform evaluations. All patients receive measurements of their weight and breathing capacity, as well as an examination by the neurologist and nurse. They are then seen by some or all of the following team members: physical therapist, occupational therapist, speech therapist, dietitian, assistive technologist, nurse counselor, social worker, respiratory therapist, research nurse, and genetic counselor.

If a patient requires the specialized services of a pulmonologist, this can also be arranged. Treatment is individualized so that patients see appropriate team members, as determined by the neurologist, nurse and patient.

Interaction with Your Primary Care Physician
Patients must continue to see their own primary care physicians for general medical care while utilizing the ALS Center's specialized services.

Goals of the Clinic

  • Serve as a center for the diagnosis, treatment, and ongoing care of patients with amyotrophic lateral sclerosis (ALS)
  • Educate patients and families about the disease process and what they can expect
  • Coordinate care with primary care physicians
  • Provide specialized services for patients with ALS and related disorders
  • Maximize patient function by utilizing a multidisciplinary approach
  • Offer patients the opportunity to participate in research protocols
  • Keep patients and families abreast of research, including research in our own clinic

 


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Need an appointment? Request one online 24 hours/day, 7 days/week or call 800-789-PENN (7366) to speak to a referral counselor.

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ALS Clinic
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330 South 9th Street
Philadelphia, PA 19107
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