FSR - Neurosarcoidosis

In the United States, sarcoidosis most commonly targets the lungs, but the disease can also affect many other organs and systems. One of the systems it can affect is the nervous system, which includes the brain, spinal cord and nerves throughout the body.

Researchers think that neurosarcoidosis affects as many as 15 percent of sarcoidosis patients. Some people with neurosarcoidosis will recover completely. In others, sarcoidosis and related nervous system symptons are chronic, lasting a long time or even a lifetime. For more information, order the FSR brochure Sarcoidosis and the Nervous System.

SYMPTOMS

facial palsy (drooping and/or paralysis of the muscles on one side of your face)
headaches
eye pain, blurry or double vision, blindness
weakness, numbness, tingling and/or pain in the face, arms and/or legs
arm and/or leg paralysis
seizures
behavior and mood changes, irritability, memory loss and hallucinations (rare)

The problems caused by neurosarcoidosis can include:

nerve inflammation and damage
peripheral neuropathy
masses of granulomas in the meninges (or more rarely in the brain) can lead to meningitis, hydrocephalus and neuroendocrine disorders
coma

DIAGNOSIS

Nervous system symptoms are not usually the first or only sign of sarcoidosis. Sometimes, however, neurosarcoidosis is the only sign of sarcoidosis. When this is the case it is hard to diagnose. Early diagnosis and treatment are the keys to preventing the potentially serious effects of neurosarcoidosis.

Some primary care doctors can diagnose and treat sarcoidosis, but it is probably best to work with a sarcoidosis specialist, a neurologist or both to get the screening needed for nervous system complications. A neuro-oththalmologist might be helpful if you have vision problems related to neurosarcoidosis.

There is no one test that a doctor can use to diagnose neurosarcoidosis, and there are no official guidelines for doctors to tell them how to screen their patients for the condition. Although the tests listed below are not specific for neurosarcoidosis, the ones that your doctor recommends for you, taken together, can help give a more complete picture of your risk for nervous system complications.

Imaging Tests for Neurosarcoidosis: Computed tomography (CT), gallium scans, magnetic resonance imaging (MRI), positron emission tomography (PET).
Laboratory Tests: lumbar puncture or spinal tap for cerebrospinal fluid
Biopsies: Only rarely do doctors recommend brain or spinal cord biopsies.
masses of granulomas in the meninges (or more rarely in the brain) can lead to meningitis, hy

TREATMENT

Most doctors treat neurosarcoidosis with corticosteroid medications, which are also called glucocorticoids or steroids. These are powerful drugs that can stop or prevent nervous system injury by reducing the inflammation caused by sarcoidosis. Commonly prescribed glucocorticoids include cortisone, prednisone, and prednisolone.

For people who cannot take corticosteroids, doctors might prescribe any of a number of other medications that suppress the immune system and reduce inflammation. Doctors may also prescribe pain medication to treat the pain associated with the inflammation of the peripheral nerves or certain skin nerves. Antiepileptic medications have been used to treat those with seizures due to sarcoidosis. In rare cases, radiation and surgery may be used.

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