What to expect at your MDA clinic visit

While your clinic visit will vary depending upon whether it’s a diagnostic evaluation or follow-up visit, one thing to know is that you’ll find dedicated teams of top health professionals skilled in the diagnosis and medical management of neuromuscular diseases. Such management ranges from measures for controlling symptoms to medical interventions designed to enhance quality of life and independence.

Through MDA-funded clinics, payment for select services is available. To maximize MDA resources, payment is made after private and public insurance have paid on the services. If you have no health insurance coverage, or your insurance doesn’t cover services received at an MDA clinic in your area, MDA can still help. Contact your local MDA office to learn about all clinic services offered and those for which financial assistance is available.

If your physician suspects that you may be affected by a neuromuscular disorder included in MDA’s program, we encourage you to phone your local MDA office to be connected to the MDA clinic in your area. The diagnostic process depends in large part upon which neuromuscular disease is suspected. For information about the diagnostic process for specific neuromuscular disorders, please visit the Learn about Muscle Diseases section of this site.

Your local MDA health care service coordinator will be present at clinic to answer questions, provide educational materials, coordinate any MDA services you may need and assist with community resource referrals.

Upon diagnosis, a number of medical management measures may be recommended by the MDA clinic team, including:

Periodic re-evaluations

Follow-up visits are usually scheduled annually, but at certain stages in the progression of your disease, more frequent checkups may be indicated. MDA will cover up to four clinic visits a year.

Speciality consultations

Depending upon your diagnosis, consultations with various specialists may be recommended, such as a cardiologist or pulmonologist. Initially, the purpose of such visits may be to establish baseline measurements of heart or respiratory function so that these can be monitored for changes.

Physical, occupational, respiratory and speech therapy

An MDA clinic physician may prescribe physical, occupational, respiratory and/or speech therapy to be administered by a certified practitioner. Therapy may be offered at the MDA clinic, at another facility or in the home.

• Physical therapy:MDA will assist with the payment for one consultation annually to evaluate the need for physical therapy, and instruct family members and others on how to administer prescribed exercises. Physical therapy can neither arrest the disease process nor restore affected muscle tissue. It may, however, help keep still-healthy muscles functioning, and may delay the onset of contractures and provide an individual with greater range of motion.
• Occupational therapy:MDA will assist with the payment for one consultation annually as prescribed to enable people to make maximum use of their physical capabilities by being instructed in the use of specially designed implements and daily living aids in their home and work environments.
• Respiratory therapy:MDA will assist with payment for one consultation annually as prescribed for instruction in the use of prescribed respiratory therapy equipment designed to augment or increase vital lung capacity.
• Speech therapy:When prescribed by an MDA clinic physician, the Association will assist with payment for one consultation annually to evaluate the muscles responsible for speech and swallowing. Through such an evaluation, a speech-language pathologist can determine if exercise, use of an augmentative, alternative communication device (AAC), and/or modifications to meals are appropriate.

Social services

Social services are a vital aspect of the MDA clinic program. MDA local offices and clinics may provide additional resources for families seeking direction in identifying alternative sources of payment for medical services and assisting with the identification of resources to maintain quality of life and independence. Your MDA health care service coordinator will be on hand during your clinic visit to discuss local resources and answer any questions you might have.

Cooperation with personal physician

A summary report may be made available upon request to your personal physician after the initial clinic examination and after each follow-up visit. In addition, your MDA clinic physician may advise your primary care physician on problems related to your specific conditions.

Genetic counseling

Genetic counseling may be provided to families of those who have any of the inherited neuromuscular diseases. Genetic counselors can assist in obtaining and interpreting genetic (DNA) tests, insurance coverage for genetic testing, and identifying others within the family who may be at risk for the genetic disorder.

Genetic counselors can help families obtain a diagnosis for a genetic condition, determine whether parents of an affected child are carriers of the disorder, and educate families regarding the risks of passing on the disease to future generations.