WHAT IS NEUROSARCOIDOSIS?
Neurosarcoidosis is a serious and devastating 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 (Bel ’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. Is there any 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. What is the 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.
What research is being done?
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. Organizations:
Sarcoidosis Research Institute
National Organization for Rare Disorders (NORD)
Tel: 203-744-0100 Voice Mail 800-999-NORD (6673) Fax: 203-798-2291
National Eye Institute (NEI)
National Institute of Allergy and Infectious
National Heart, Lung, and Blood Institute Health Information
P.O. Box 30105
Bethesda, MD 20824-0105
Tel: 301-592-8573/240-629-3255 (TTY) Recorded Info: 800-575-
Office of Communications and Public Liaison
National Institute of Neurological Disorders and Stroke
National Institutes of Health
Bethesda, MD 20892
NINDS health-related material is provided for information purposes only and does not necessarily represent endorsement by or an
official position of the National Institute of Neurological Disorders and Stroke or any other Federal agency. Advice on the treatment or
care of an individual patient should be obtained through consultation with a physician who has examined that patient or is familiar with
that patient's medical history.
All NINDS-prepared information is in the public domain and may be freely copied. Credit to the NINDS or the NIH is appreciated.
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