While your MDA Care Center 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 expert 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.
If your physician suspects that you may be affected by a neuromuscular disorder included in MDA’s program, we encourage you to contact your local MDA office to be connected to the MDA Care Center 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 Neuromuscular Diseases section.
Your local MDA health care service coordinator will be available at the MDA Care Center to answer questions, provide educational materials, coordinate any services you may need and assist with community resource referrals.
Upon diagnosis, a number of medical management measures may be recommended by the MDA Care Center team, including:
Follow-up visits are usually scheduled annually, but at certain stages in the progression of your disease, more frequent checkups may be indicated.
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.
An MDA Care Center physician may prescribe physical, occupational, respiratory and/or speech therapy to be administered by a certified practitioner. Therapy may be offered at the MDA Care Center, at another facility or in the home.
Social services are a vital aspect of the MDA family and clinical support program. MDA local offices and MDA Care Centers 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 MDA Care Center visit to discuss local resources and answer any questions you might have.
A summary report may be made available upon request to your personal physician after the initial MDA Care Center examination and after each follow-up visit. In addition, your MDA Care Center physician may advise your primary care physician on problems related to your specific conditions.
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.