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Neurosarcoidosis

What is Neurosarcoidosis?

Neurosarcoidosis is sarcoidosis that affects the nervous system—the brain, spinal cord, and/or peripheral nerves. Sarcoidosis is an inflammatory disease that occurs when the immune system goes into overdrive for an unknown reason. It is characterized by the formation of microscopic clumps of inflammatory cells, called granulomas, in one or more organs of the body. When too many granulomas form, they can affect how the organ functions and cause a variety of symptoms.

Sarcoidosis most commonly affects the lungs and lymph nodes, but it may target any organ in the body. The neurological form often occurs in the cranial and facial nerves, the hypothalamus, and the pituitary gland.

doctor consulting patient

Symptoms of Neurosarcoidosis

Symptoms of neurosarcoidosis may come on suddenly, gradually, or never become noticeable.

Neurosarcoidosis symptoms may include:

  • Behavioral and mood changes, such as irritability and agitation
  • Eye pain and redness
  • Facial palsy (Bell’s palsy), or drooping of one side of the face, which is the most common neurological symptom of sarcoidosis
  • Hallucinations
  • Headaches
  • Hearing loss
  • Memory loss
  • Numbness weakness, tingling, or pain in the face, arms, and/or legs
  • Paralysis in arms and/or legs
  • Seizures
  • Vision problems

Neurological symptoms are not usually the first sign of sarcoidosis. Symptoms of sarcoidosis vary depending on the organs affected, but many people experience the following:

  • Chest pain
  • Chronic dry cough
  • Fatigue
  • Fever
  • Pain and swelling in the joints
  • Shortness of breath
  • Swollen lymph nodes
  • Weight loss
  • Wheezing

The presence of these symptoms does not necessarily mean you have sarcoidosis or neurosarcoidosis. Contact a medical professional for an evaluation.

doctor consoling senior patient

Treatments for Neurosarcoidosis

For some people, neurosarcoidosis may resolve without medical treatment. For others, the disease can become chronic and even last a lifetime. 

There is no known cure for neurosarcoidosis, but treatment may help control symptoms and prevent complications. The first line of treatment for neurosarcoidosis is corticosteroid medication, such as prednisone. Corticosteroids can slow, halt, or even prevent injury to the nervous system by reducing inflammation. If you can’t take corticosteroids or they are not controlling your symptoms, your doctor may prescribe immunosuppressive drugs.

Corticosteroids and immunosuppressive drugs can have undesirable side effects, especially when used long term. It’s important to work with your doctor to find the lowest effective dose.

Additional Information

How common is neurosarcoidosis?

Neurosarcoidosis is relatively rare. Researchers estimate that neurosarcoidosis affects between 5 and 15 percent of people with sarcoidosis. According to the Foundation for Sarcoidosis Research, an estimated 200,000 Americans are living with sarcoidosis.

Who gets neurosarcoidosis?

Like other forms of sarcoidosis, men and women of all ages can develop neurosarcoidosis. However, sarcoidosis usually appears between the ages of 20 and 40 and affects more women than men. In the United States, sarcoidosis is most common in African Americans and people of European descent, particularly Scandinavians.

The cause of sarcoidosis is unknown, but research suggests there is a genetic predisposition. Research also shows the disease may be triggered by certain bacteria, viruses, and chemicals. 

How is neurosarcoidosis diagnosed?

There is no single test that can confirm neurosarcoidosis, but a combination of the following tests may be used:

  • Biopsy from an organ, likely the lungs, to show evidence of granulomas
  • Imaging tests, such as computed tomography (CT), magnetic resonance imaging (MRI), positron emission tomography (PET), or a gallium scan to get a better look at the central nervous system
  • Lumbar puncture to evaluate cerebrospinal fluid for elevated protein levels and lymphocytes, which are common biomarkers in people with neurosarcoidosis, and to rule out other conditions

 Additional Information & Resources:

Foundation for Sarcoidosis Research
National Institute of Neurological Disorders and Stroke

Group 12
  Americans
According to the Foundation for Sarcoidosis Research, an estimated 200,000 Americans are living with sarcoidosis.