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General Description
The ALS Association 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 Clinic are:
- To establish a definitive
diagnosis in patients referred for possible
ALS;
- 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 clinic
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 or physiatrist,
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 Clinic'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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