Learning About Neurosarcoidosis

Sarcoidosis is a disease that causes the immune system to form tiny clumps of inflamed tissue. These clumps, called granulomas, can happen in different parts of the body. Sometimes they can affect the nervous system. When that happens, it's called neurosarcoidosis.

Neurosarcoidosis affects about 5 to 10 out of every 100 people with sarcoidosis. For some people, nervous system problems are the very first sign of the disease.

The exact cause is not fully known. Researchers believe that the immune system in certain people overreacts to something in the environment. It could be things like bacteria, viruses, dust particles, or chemicals. This triggers tissue clumps to form.

In neurosarcoidosis, those tissue clumps can affect how the brain, spinal cord, and nerves work.

The condition isn't contagious. You can't catch it from somebody else.

Symptoms can vary. It depends on which part of the nervous system is affected. Symptoms can range from mild to severe. They may come on slowly or more suddenly. Common symptoms include:

• Facial weakness or drooping.
• Headaches, dizziness, and problems with vision or hearing.
• Numbness, tingling, or weakness in the arms or legs.
• Trouble walking.
• Bladder or bowel control issues.
• Seizures or confusion.
• Extreme tiredness.
• Unusual thirst.
• Unexplained weight changes.

Many of these symptoms can happen with other conditions too. That's why doctors usually need tests to find out the cause.

Your doctor will review your medical history. They'll also do an exam and order tests. These may include an MRI of the brain and spinal cord, a lumbar puncture (spinal tap), blood tests, and chest imaging. A biopsy may also be used. It involves looking at a small tissue sample under a microscope.

It often takes more than one test to diagnose the condition.

Treatment focuses on controlling symptoms and lowering the risk of further nerve damage. At this time, there's no cure.

The main treatment is a corticosteroid (steroid) called prednisone. It works by reducing inflammation. Depending on how severe your symptoms are, treatment may be needed for months or years.

If steroids cause too many side effects or don't work, your doctor may recommend medicines that suppress your immune system. Physical therapy, hormone replacement, or assistive devices such as a cane or walker may also be part of your care plan.

What to expect varies from person to person. Some people's symptoms go away within 4 to 6 months, with or without treatment. Others have symptoms that come and go over the course of years. In some cases, lasting nerve damage can happen. Rarely, it can become life-threatening. This can happen particularly if the brainstem is involved.

Early diagnosis and treatment offer the best chance of a good outcome. If you have sarcoidosis, keep track of your symptoms. If you notice new or worsening neurological symptoms, contact your doctor right away.