Neuromuscular Disorders Care

Our approach to neuromuscular disorders care

To treat rare and ultra-rare neuromuscular disorders, we’re here with the comprehensive and compassionate care you need. If you have ALS, muscular dystrophy, myasthenia gravis, myopathy or any of 40 other neuromuscular disorders, our multidisciplinary experts will:

• ensure you get an accurate diagnosis
• help you cope with daily life, become more mobile and feel more comfortable
• connect you with professionals to get you the emotional and practical support you need 

We take pride in always being available to answer any questions and issues that arise. We’ve set up a communication system that allows us to stay in constant communication with you and your family. 

We are here to take care of your disability. The therapeutic interventions we provide offer you a pathway to a better quality of life. 

How to work with us

If you have a neuromuscular disorder, your neurologist will need to refer you to our program. We take external neurologist’s referrals and internal, UCI Health referrals. 

We rely on detailed muscle strength and reflex testing, so initially, in-person visits are essential for accurate neuromuscular care. You’ll meet with one of our specialized neurologists for a comprehensive one and a half- to two-hour visit. You’ll also consult with one of our fellows and then we’ll refer you to our therapists. 

How our specialists work with you

If you become our patient, a physical therapist will closely assess your condition and possibly prescribe physical exercises. They’ll check whether you need assistive devices like braces, canes, walkers or wheelchairs. 

Our speech pathologist will evaluate the intelligibility of your speech and may prescribe communication devices or a synthesizer. They will also test your swallowing and may request additional tests and/or diet modifications. 

We’ll look at your pulmonary function. Our respiratory therapist will search for any dysfunction of your diaphragm or respiratory muscles. We may refer you to pulmonology, a sleep study, or order a respiratory assist device such as a BiPAP.

Additional sources of support

We have a social worker who works in our clinics. They can help you with emotional support, care coordination, family and caregiver education and access to community resources. 

Representatives from the ALS Association as well as the Muscular Dystrophy Association periodically come to our clinics. They provide funding and infrastructure for the clinics themselves as well as ongoing patient education. Our clinics are multidisciplinary, so your entire team is there to help. 

These organizations offer you some home support and may be able to loan wheelchairs or walkers. They may also be able to provide custodial care, helping you with non-medical personal needs. Our Tuesday morning clinic is for ALS, and the Tuesday and Thursday afternoon clinics focus on muscular dystrophy.

Why choose UCI Health for neuromuscular disorders care?

UCI Health is the only place to go in Orange County if you have a complicated neuromuscular case

We’re the only facility in Orange County that offers leading-edge care for these rare neuromuscular disorders. For example, we have the pathology expertise to perform a muscle biopsy and interpretation, a highly specialized procedure. 

Because we resolve difficult diagnoses, we get referrals from Riverside, San Diego, Los Angeles and other areas far outside Orange County.

We are the only lab in Southern California that performs autonomic testing

These important evaluations help us understand how well your body is regulating all its automatic functions. Looking at your breathing, heart rate, sweating and other automatic processes helps us pinpoint a challenging neuromuscular diagnosis.

We have specialized clinics in rare and ultra-rare conditions

We offer a clinic in a very rare condition called Pompe disease that we operate with a UCI Health geneticist. In addition to our ALS and muscular dystrophy clinics, we also have a myasthenia gravis clinic. These specialty clinics offer an unmatched level of expertise.

One of our unique strengths is the ability to provide hundreds of clinical trials, a ray of hope in a complex landscape

Our UCI Health Neurology Program conducts a continuous flow of clinical trials. We are committed to researching causes and experimental treatments for neuromuscular disorders. If you qualify for an appropriate clinical trial, you may get access to treatments not widely available. 

Your participation is also of great service to future patients. 

The Neuromuscular Disorders Care Program holds a weekly consensus conference

Our multidisciplinary approach to care also applies to how we collaborate behind the scenes. We meet every week to discuss challenging cases and what our next strategy should be. Experts bring in MRI images and pathology findings to facilitate a precise discussion between peers.

You deserve a team with unparalleled expertise

Let us support you in every way possible. We offer state-of-the-art treatments, therapies, clinical trials and emotional and practical assistance.

Ask your neurologist to refer you to our program.