Table of ContentsView AllTable of ContentsTypesSymptomsCausesDiagnosisTreatmentPrognosisCoping

Table of ContentsView All

View All

Table of Contents

Types

Symptoms

Causes

Diagnosis

Treatment

Prognosis

Coping

These are the muscles farthest from the center of the body, like hands and feet, and parts of the arms and legs. Although the age of onset can be at any time, most often it develops in later life and progresses slowly.

This article will provide an overview of distal muscular dystrophy, including the different types of DD, the causes, symptoms, and diagnosis and treatment options.

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Woman with hand pain

Types of Distal Myopathies

While DD is a type of distal myopathy, there are also several subtypes of DD. They can vary widely in severity, symptoms, and progression. Subtypes of DD can include:

Distal Muscular Dystrophy Symptoms

Specific symptoms can vary, depending on the subtype of DD that you have. In general, the first symptom is often weakness in the muscles farthest from the hips and shoulders, like hands, feet, and the lower part of the arms and legs.These are also known as the distal muscles.

In the muscles that are affected,muscle wasting(atrophy) may occur, causing them to become smaller. Sometimes the muscles get so weak that mobility and range of motion are affected.

Different types of DD can affect different groups of muscles, causing varying symptoms, particularly as the condition progresses.

DD is aninherited condition, meaning it’s passed down from parent to child. It can be either:

Diagnosing DD

Diagnosing any type of muscular dystrophy involves first taking a detailed medical and family history, and doing a physical exam. The exam is especially important in seeing any pattern of weakness.

Diagnostics includes the following:

What to Expect After a Myopathy Diagnosis

Right now, there is no cure for any form of DD. Treatment depends on the symptoms of the individual. Therapies can include:

If an individual is having problems swallowing, assistance may be needed to prevent aspiration (when food or drink are breathed into the lungs) or choking (blocking of the airway). If the heart is affected, this must be monitored. Because each subtype can have such different symptoms, the therapies can vary widely, depending on a person’s needs.

The prognosis for DD will depend on the subtype a person has. It also depends on the individual progression of the disorder. Some people experience slow progression and have a very mild disease course, while others may have significant weakness and impairment.

In Laing distal myopathy, the progression is so slow that even into an individual’s 60s, wheelchairs or mobility aids are not needed.Someone with VCP disease will have comorbid conditions that can affect the brain or bone, impacting their prognosis.

Prognoses Are Highly VariableTalk with your healthcare provider about your specific diagnosis and clinical features of your condition, like any genetic mutations or comorbidities (co-occurring health conditions) you may have. Your provider can further explain your specific prognosis, taking into account your personal health history and functioning.

Prognoses Are Highly Variable

Talk with your healthcare provider about your specific diagnosis and clinical features of your condition, like any genetic mutations or comorbidities (co-occurring health conditions) you may have. Your provider can further explain your specific prognosis, taking into account your personal health history and functioning.

How Coping With Progressive Disorders Can Be Difficult

Living with a progressive condition can be difficult, especially if it starts to interfere with your daily activities. Talk with your healthcare provider about finding a counselor or getting involved in asupport group. It can help to have peers who understand what it’s like to live with DD, or who can provide guidance and tips for different stages of the disease.

A professional can also assess you fordepressionoranxietyif you have symptoms—both of which can impair your quality of life. There is help for these symptoms, and you can develop coping tools and strategies with support.

Summary

“Distal muscular dystrophy” is a term for a group of rare and progressive genetic muscular dystrophies. Symptoms can vary widely depending on the subtype. Although there is no cure for these conditions, treatment involves addressing the symptoms present with therapies to help with muscle strength.

Talk with your treatment team about the symptoms you may be having, what your disease course may look like, and the treatment options available to you.

A Word From Verywell

Living with any long-term condition isn’t easy, especially if it is progressive. Therapies, both physical and emotional, are available to support you. New research is being done all the time. If you’re interested inclinical trials, talk with your treatment team about whether that is a possibility for you.

7 SourcesVerywell Health uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read oureditorial processto learn more about how we fact-check and keep our content accurate, reliable, and trustworthy.Muscular Dystrophy Association.Distal myopathies.Muscular Dystrophy Association.Types of distal MD.Muscular Dystrophy Association.Signs and symptoms.Centers for Disease Control and Prevention.What is muscular dystrophy?.Muscular Dystrophy Association.Causes/inheritance.Muscular Dystrophy Association.Diagnosis.National Organization for Rare Disorders.Distal myopathy.

7 Sources

Verywell Health uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read oureditorial processto learn more about how we fact-check and keep our content accurate, reliable, and trustworthy.Muscular Dystrophy Association.Distal myopathies.Muscular Dystrophy Association.Types of distal MD.Muscular Dystrophy Association.Signs and symptoms.Centers for Disease Control and Prevention.What is muscular dystrophy?.Muscular Dystrophy Association.Causes/inheritance.Muscular Dystrophy Association.Diagnosis.National Organization for Rare Disorders.Distal myopathy.

Verywell Health uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read oureditorial processto learn more about how we fact-check and keep our content accurate, reliable, and trustworthy.

Muscular Dystrophy Association.Distal myopathies.Muscular Dystrophy Association.Types of distal MD.Muscular Dystrophy Association.Signs and symptoms.Centers for Disease Control and Prevention.What is muscular dystrophy?.Muscular Dystrophy Association.Causes/inheritance.Muscular Dystrophy Association.Diagnosis.National Organization for Rare Disorders.Distal myopathy.

Muscular Dystrophy Association.Distal myopathies.

Muscular Dystrophy Association.Types of distal MD.

Muscular Dystrophy Association.Signs and symptoms.

Centers for Disease Control and Prevention.What is muscular dystrophy?.

Muscular Dystrophy Association.Causes/inheritance.

Muscular Dystrophy Association.Diagnosis.

National Organization for Rare Disorders.Distal myopathy.

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