Neurosarcoidosis

Neurosarcoidosis is the occurrence of sarcoidosis in the nervous system. Sarcoidosis is a chronic inflammatory disorder that primarily affects the lungs, but can also impact almost every other organ and system in the body. It typically occurs in adults between 20 and 40 years of age.

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 five 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. Neurosarcoidosis can cause:

• Headache
• Seizures
• Memory loss
• Hallucinations

• Irritability
• Agitation
• 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.

There is no standard of treatment for neurosarcoidosis. Doctors generally recommend corticosteroid therapy as first-line therapy for individuals with the condition. Additional treatment with immunomodulatory drugs has benefited some individuals. While the use of corticosteroids and immunosuppressive drugs is effective, these medications also have undesirable side effects.

The prognosis for people with neurosarcoidosis varies. Many with the condition will recover completely; others will have a chronically progressing or on-and-off course of illness.

The National Institute of Neurological Disorders and Stroke (NINDS) along with other institutes within National Institutes of Health (NIH) coordinates and funds research into the disease mechanisms of sarcoidosis, predisposing factors, genetic underpinnings, and the potential for clinical therapies.

How can I or my loved one help improve care for people with neurosarcoidosis?

Consider participating in a clinical trial so clinicians and scientists can learn more about neurosarcardoisis and related disorders. Clinical research uses human volunteers to help researchers learn more about a disorder and perhaps find better ways to safely detect, treat, or prevent disease.

All types of volunteers are needed—those who are healthy or may have an illness or disease—of all different ages, sexes, races, and ethnicities to ensure that study results apply to as many people as possible, and that treatments will be safe and effective for everyone who will use them.

For information about participating in clinical research visit NIH Clinical Research Trials and You. Learn about clinical trials currently looking for people with neurosarcardoisis at Clinicaltrials.gov.

Where can I find more information about neurosarcoidosis?

Information may be available from the following resources:

MedlinePlus

National Eye Institute (NEI)

National Heart, Lung, and Blood Institute (NHLBI)

National Institute of Allergy and Infectious Diseases (NIAID)

Content source: https://www.ninds.nih.gov/health-information/disorders/neurosarcoidosis Accessed June 23, 2023.

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