Working With Your Myotonic Dystrophy Care Team

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



Respiratory failure before and after general anesthesia.


Hearing loss.


Abnormal heartbeat, heart damage (cardiomyopathy), fainting spells.


Benign tumors associated with hair follicles (pilomatrixoma).


Weight control, special diets, alternative feeding methods and nutrition.

Educational psychologist

Special educational needs, additional support required.


Insulin resistance, benign thyroid mass.


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


Inheritance patterns of genetic conditions, genetic counselling, family members at risk.


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.


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

Orthopedic Surgeon

Foot deformities, curvature of the spine.


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.


Gait issues and muscle weakness.

Primary Care Physician

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


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.

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