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NINDS Disorders is an index of neurological conditions provided by the National Institute of Neurological Disorders and Stroke. This valuable tool offers detailed descriptions, facts on treatment and prognosis, and patient organization contact information for over 500 identified neurological disorders.

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Inclusion Body Myositis

Inclusion body myositis (IBM) is one of a group of muscle diseases known as the inflammatory myopathies, which are characterized by chronic, progressive muscle inflammation accompanied by muscle weakness.  The onset of muscle weakness in IBM is generally gradual (over months or years) and affects both proximal (close to the trunk of the body) and distal (further away from the trunk) muscles.  Muscle weakness may affect only one side of the body.  Falling and tripping are usually the first noticeable symptoms of IBM.  For some individuals, the disorder begins with weakness in the wrists and fingers that causes difficulty with pinching, buttoning, and gripping objects.  There may be weakness of the wrist and finger muscles and atrophy (thinning or loss of muscle bulk) of the forearm muscles and quadricep muscles in the legs.  Difficulty swallowing occurs in approximately half of IBM cases.  Symptoms of the disease usually begin after the age of 50, although the disease can occur earlier.  IBM occurs more frequently in men than in women.

Treatment

There is no cure for IBM, nor is there a standard course of treatment.  The disease is generally unresponsive to corticosteroids and immunosuppressive drugs.  Some evidence suggests that intravenous immunoglobulin may have a slight, but short-lasting, beneficial effect in a small number of cases.  Physical therapy may be helpful in maintaining mobility.  Other therapy is symptomatic and supportive.

Prognosis

IBM is generally resistant to all therapies and its rate of progression appears to be unaffected by currently available treatments.

Research

The National Institute of Neurological Disorders and Stroke (NINDS), National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS), National Institute of Environmental Health Sciences (NIEHS) and other institutes of the National Institutes of Health (NIH) conduct research relating to IBM in laboratories at the NIH and support additional research through grants to major medical institutions across the country.  Currently funded research is exploring patterns of gene expression among the inflammatory myopathies, the role of viral infection as a precursor to the disorders, and the safety and efficacy of various treatment regimens. 

View a list of studies currently seeking patients.

View more studies on this condition.

Read additional information from Medline Plus.

Organizations

American Autoimmune Related Diseases Association

National organization that works to alleviate suffering and the socioeconomic impact of autoimmunity. Dedicated to the eradication of autoimmune diseases through fostering and facilitating collaboration in the areas of education, research, and patient services.

22100 Gratiot Avenue
Eastpointe, MI 48021-2227
Tel: 586-776-3900 800-598-4668
Fax: 586-776-3903

Myositis Association

Works to improve the lives of those affected by inflammatory myopathies. Seeks out persons with inflammatory myopathies, provides a support network, acts as a resource for patients and the medical community, advocates for patients, and promotes research into the causes and treatment of the disorders.

1737 King Street
Suite 600
Alexandria, VA 22314
Tel: 703-299-4850 800-821-7356
Fax: 202-466-8940

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