Neurosarcoidosis
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What is Neurosarcoidosis?Is there any treatment?What is the prognosis?What research is being done?Organizations
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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 (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.
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.
Select this link
to view a list of studies currently seeking patients.
Organizations
Sarcoidosis Research Institute
3475 Central Avenue
Memphis,
TN
38111
sarcoidosis@comcast.net
http://www.sarcoidosisresearch.org
Tel: 901-830-4749
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National Organization for Rare Disorders (NORD)
P.O. Box 1968
(55 Kenosia Avenue)
Danbury,
CT
06813-1968
orphan@rarediseases.org
http://www.rarediseases.org
Tel: 203-744-0100
Voice Mail 800-999-NORD (6673)
Fax: 203-798-2291
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National Eye Institute (NEI)
National Institutes of Health, DHHS
31 Center Drive, Rm. 6A32 MSC 2510
Bethesda,
MD
20892-2510
2020@nei.nih.gov
http://www.nei.nih.gov
Tel: 301-496-5248
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National Institute of Allergy and Infectious
Diseases (NIAID)
National Institutes of Health, DHHS
6610 Rockledge Drive, MSC 6612
Bethesda,
MD
20892-6612
http://www.niaid.nih.gov
Tel: 301-496-5717
|
National Heart, Lung, and Blood Institute
Health Information Center
P.O. Box 30105
Bethesda,
MD
20824-0105
NHLBIinfo@nhlbi.nih.gov
http://www.nhlbi.nih.gov
Tel: 301-592-8573/240-629-3255 (TTY)
Recorded Info: 800-575-WELL (-9355)
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Prepared by:
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
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Last updated February 14, 2007
