With Madhu Soni, MD
Rush clinicians provide coordinated, comprehensive and multidisciplinary care for patients with conditions such as amyotrophic lateral sclerosis, myasthenia gravis and muscular dystrophy, combining leading-edge medical care with expertise in early diagnosis and a full range of support services.
Madhu Soni, MD, is chief of the Division of Neuromuscular Medicine and director of the ALS Clinic at Rush University Medical Center.
Rush has board-certified neuromuscular faculty who are highly competent in evaluating and diagnosing patients based on history, clinical exam and diagnostic testing. This includes routine electrodiagnostic testing and single-fiber EMG testing, which is not available at all centers. We also have a robust multidisciplinary team that includes a very experienced genetic counselor who assists with genetic testing.
Genetic testing is an important tool in diagnosing neuromuscular conditions and is a routine consideration for our team. Targeted testing is done based on the clinical presentation, and this provides specificity that decreases the need for other tests. For example, muscle biopsies are not required as often because of advancements in genetic testing, particularly for muscular dystrophy.
Genetic testing is also instrumental in confirming diagnoses for conditions where we now have specific treatments available.
Rush offers FDA-approved intrathecal infusions for patients with ALS associated with the SOD1 mutation and for those with spinal muscular atrophy. We also provide enzyme replacement therapy for Pompe disease, a glycogen storage disease that causes myopathy
It's the essence of our patient-centered approach to care, particularly for people living with muscular dystrophy or ALS. We have a comprehensive clinic visit that holistically addresses patients' needs and allows them to be seen by providers from various disciplines in one setting. It’s a one-stop shop.
In our ALS and Muscular Dystrophy Association clinics, providers include not only a neuromuscular neurologist and nurse, but a pulmonologist, a respiratory therapist who performs respiratory muscle strength testing in the clinic, a dietitian, a social worker, a genetic counselor, an orthotist, and therapists from speech, occupational and physical therapy. We have a coordinator who organizes the clinic flow for each patient’s experience. In the ALS Clinic, we also have a nurse care service coordinator from ALS United, a community partner that provides resources and support to patients and the clinic.
Monthly, we host two full-day multidisciplinary ALS clinics and one MDA clinic. We're also fortunate to have a colleague in physical medicine and rehabilitation who can see patients the same day for wheelchair assessments, and a palliative medicine neurologist with whom we collaborate. Additionally, we have multidisciplinary peripheral nerve restoration and hereditary neuropathy clinics.
These affiliations inform patients about the level of expertise, resources and quality of care they can expect to receive. For example, the organizations provide educational resources, support research, host patient and caregiver support groups, and lend durable medical equipment to patients. The ALS United care service coordinator checks on patients in between clinic visits and makes house calls if needed. Engagement in these clinics also provides an opportunity for patients to participate in research studies and clinical trials.
People living with neuromuscular conditions will continue to be best served by a multidisciplinary care approach. Advancements in genetic testing and identification of biomarkers will further inform the development of target-specific therapies and increase the options to individualize care for those with motor neuron disease, neuropathy, neuromuscular junction conditions, muscular dystrophy and other myopathies. Technology will play an increased role including with the use of wearable devices to track disease progression and use of brain computer interface to optimize function. The future promises increasing treatment options for neuromuscular diseases.
To be the premier regional destination for multidisciplinary, patient-centered neuromuscular care offering state-of-the-art diagnostic services, therapeutic interventions and research opportunities.
