Because of the range of systems affected by myotonic dystrophy (DM), you will likely end up working with a multidisciplinary team to manage your symptoms. The list below details what each specialist may focus on, and our “Find a Doctor” map can help you find a clinician who understands and can help you navigate the symptoms of DM.
DM affects almost everyone differently, and you may end up knowing more about the disorder – especially your particular case – than any individual specialist you see. We encourage you to download and share detailed information from our Clinical Care Recommendations. By taking an active role in the diagnosis and management of your condition, you can help make sure that potential complications are detected and managed at the earliest stages.
Medical Specialist
Complaint
Anesthesiologist
Respiratory failure before and after general anesthesia.
Audiologist
Hearing loss.
Cardiologist
Abnormal heartbeat, heart damage (cardiomyopathy), fainting spells.
Dermatologist
Benign tumors associated with hair follicles (pilomatrixoma).
Dietician
Weight control, special diets, alternative feeding methods and nutrition.
Educational psychologist
Special educational needs, additional support required.
Endocrinologist
Insulin resistance, benign thyroid mass.
Gastroenterologist
Chronic diarrhea, constipation, unexplained stomach pain, gallstones, swallowing problems.
Geneticist
Inheritance patterns of genetic conditions, genetic counselling, family members at risk.
Neurologist
Weakness, stiffness, and chronic muscle pain, cognitive development delays, reduced executive function.
Occupational therapist (OT)
Problems managing daily living activities, assessment for equipment and housing adaptations.
Ophthalmologist
Blurry or dimmed vision (possible cataracts), eye muscle weakness, droopy eyelids (ptosis).
Orthopedic Surgeon
Foot deformities, curvature of the spine.
Pediatrician
Hypotonia (also known as floppy baby syndrome) or child with learning and behavioral problems.
Physical Therapist
Gait irregularities and muscle weakness.
Plastic Surgeon/ Oral Surgeon
Jaw and mouth bone deformities that disturb chewing and speech.
Podiatrist
Gait issues and muscle weakness.
Primary Care Physician
Exhaustion, inability to sleep well, excessive daytime sleepiness, feeling faint.
Psychiatrist
Depression, personality abnormalities such as excessive apathy, socialization issues, and attention deficit.
Pulmonary Specialist
Chronic respiratory problems, sleep apnea, frequent chest colds that do not go away, aspiration pneumonia caused by swallowing issues.
Social worker/Care manager
Social care needs, personal and respite care, social support.
Speech Pathologist
Delayed or impaired speech, swallowing difficulties.
Urologist & Reproductive Endocrinologist
Ectopic pregnancies, low testosterone, infertility, miscarriage, stillbirths.