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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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Neurosarcoidosis

Neurosarcoidosis is a manifestation of sarcoidosis in the nervous system.  Sarcoidosis is a chronic inflammatory disorder that typically occurs in adults between 20 and 40 years of age and primarily affects the lungs, but can also impact almost every other organ and system in the body.  Neurosarcoidosis is characterized by inflammation and abnormal cell deposits in any part of the nervous system – the brain, spinal cord, or peripheral nerves.  It most commonly occurs in the cranial and facial nerves, the hypothalamus (a specific area of the brain), and the pituitary gland.  It is estimated to develop in 5 to 15 percent of those individuals who have sarcoidosis.  Weakness of the facial muscles on one side of the face (Bell’s palsy) is a common symptom of neurosarcoidosis.  The optic and auditory nerves can also become involved, causing vision and hearing impairments.  It can cause headache, seizures, memory loss, hallucinations, irritability, agitation, and changes in mood and behavior.  Neurosarcoidosis can appear in an acute, explosive fashion or start as a slow chronic illness.  Because neurosarcoidosis manifests in many different ways, a diagnosis may be difficult and delayed.

Treatment

There is no agreed upon standard of treatment for neurosarcoidosis.  Doctors generally recommend corticosteroid therapy as first-line therapy for individuals with the condition.  Additional treatment with immunomodulatory drugs such as hydroxychloroquine, pentoxyfilline, thalidomide, and infliximab, and immunosuppressive drugs such as methotrexate, azathioprine, cyclosporin, and cyclophosphamide, have benefited some individuals.  While the use of corticosteroids and other immunosuppressive drugs is effective, these medications also have undesirable side effects. Side effects and experience with certain drugs may play a role in medication choices. 

Prognosis

The prognosis for patients with neurosarcoidosis varies.  Approximately two-thirds of those with the condition will recover completely; the remainder will have a chronically progressing or on-and-off course of illness.  Complications resulting from immunosuppressive treatments, such as cryptococcal and tuberculous meningitis, progressive multifocal leukoencephalopathy, and inclusion body myositis, may be fatal for a small percentage of individuals.

Research

The National Institute of Neurological Disorders and Stroke (NINDS) has joined with other institutes of the National Institutes of Health (NIH) to form a trans-NIH working group to coordinate and fund research into the disease mechanisms of sarcoidosis, predisposing factors, genetic underpinnings, and the potential for clinical therapies.  Grants are supporting research at major medical institutions across the country.  The outcomes of this research will be better ways to diagnose, treat, and ultimately cure sarcoidosis and neurosarcardoisis. 

View a list of studies currently seeking patients.

View more studies on this condition.

Read additional information from Medline Plus.

Organizations

Sarcoidosis Research Institute

Non-profit organization dedicated to increasing knowledge about sarcoidosis by disseminating information to professionals, assisting with investigation into the cause and treatment of the disease, and by providing support for individuals afflicted with sarcoidosis.

3475 Central Avenue
Memphis, TN 38111
Tel: 901-830-4749

National Eye Institute (NEI)

National Institutes of Health, DHHS
31 Center Drive, Rm. 6A32 MSC 2510
Bethesda, MD 20892-2510
Tel: 301-496-5248

National Institute of Allergy and Infectious Diseases (NIAID)

National Institutes of Health, DHHS
6610 Rockledge Drive, MSC 6612
Bethesda, MD 20892-6612
Tel: 301-496-5717

National Heart, Lung, and Blood Institute Health Information Center

P.O. Box 30105
Bethesda, MD 20824-0105
Tel: 301-592-8573/240-629-3255 (TTY) Recorded Info: 800-575-WELL (-9355)

National Organization for Rare Disorders (NORD)

Federation of voluntary health organizations dedicated to helping people with rare "orphan" diseases and assisting the organizations that serve them. Committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service.

55 Kenosia Avenue
Danbury, CT 06810
Tel: 203-744-0100 Voice Mail 800-999-NORD (6673)
Fax: 203-798-2291

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