Home / Working with your Doctor

Working with your Doctor

Because of the range of systems affected, people with DM may see multiple specialists who are unaware of the full spectrum of issues experienced by a person with the disorder. Informed patients often know more about the various aspects of DM than any single specialist they see. This variability in symptoms presents unique challenges in both the diagnosis and management of the disease. Therefore, it is important for individuals with DM and their families to learn as much as they can about the disease and its symptoms. 

Multi-disciplinary teams are often needed to provide a comprehensive, coordinated clinical care. By taking an active role in diagnosis and management of their condition, people with DM can aid this process and help make sure that potential complications are detected and managed at the earliest stages. 

Medical Specialist


Primary Care Physician

Exhaustion, inability to sleep well, excessive daytime sleepiness, feeling faint


Hypotonia (also known as floppy baby syndrome) or child with learning and behavioral problems


Blurry or dimmed vision (possible cataracts), eye muscle weakness, droopy eyelids (ptosis)


Abnormal heartbeat, heart damage (cardiomyopathy), fainting spells

Pulmonary Specialist

Chronic respiratory problems, sleep apnea, frequent chest colds that do not go away, aspiration pneumonia caused by swallowing issues


Insulin resistance, benign thyroid mass


Benign tumors associated with hair follicles (pilomatrixoma)


Chronic diarrhea, constipation, unexplained stomach pain, gallstones, swallowing problems

Urologist & Reproductive Endocrinologist

Ectopic pregnancies, low testosterone, infertility, miscarriage, stillbirths


Depression, personality abnormalities such as excessive apathy, socialization issues, and attention deficit


Nerve and muscle complaints including weakness, stiffness, and chronic muscle pain, cognitive development delays, reduced executive function


Respiratory failure before and after general anesthesia

Orthopedic Surgeon

Foot deformities, curvature of the spine


Gait issues and muscle weakness

Plastic Surgeon/
Oral Surgeon

Jaw and mouth bone deformities that disturb chewing and speech


Hearing loss

Speech Pathologist

Delayed or impaired speech, swallowing difficulties

Physical Therapist

Gait irregularities and muscle weakness


© Myotonic Dystrophy Foundation. All rights reserved.