Neurosarcoidosis

We are one of the few programs in the region with experts capable of diagnosing and treating neurosarcoidosis. It is a neurologic complication of sarcoidosis and can become life-threatening without specialized treatment.

At Henry Ford Health, you are in caring and capable hands. Neurologists with in-depth knowledge of this condition guide your care. We work alongside other specialists to provide ongoing treatment that preserves your well-being.

What is neurosarcoidosis?

Sarcoidosis is a rare condition that happens when clusters of white blood cells (granulomas) collect in your organs. They occur when the immune system attacks healthy tissue, causing inflammation that can affect organ functioning.

Sarcoidosis often forms in the lungs, skin, heart and other organs. In a small number of cases, granulomas occur in the brain and other areas of the nervous system. This condition is called neurosarcoidosis. Sarcoidosis and neurosarcoidosis have no cure. But timely treatments ease inflammation and help you avoid complications like organ damage.

Neurosarcoidosis symptoms

Neurosarcoidosis can cause a broad range of symptoms depending on where in the nervous system granulomas form.

You may experience:

• Changes in your ability to hear, smell, taste or speak
• Dizziness
• Facial weakness or drooping
• Headache
• Nerve issues that cause unusual sensations, weakness or difficulty moving
• Seizures
• Vision problems, including double vision and blindness

Neurosarcoidosis care at Henry Ford: Why choose us?

You receive services from neurologists with advanced fellowship training in neuroinflammatory disease. We excel in diagnosing and treating challenging conditions like neurosarcoidosis. This level of expertise is not widely available and is essential for successful treatment.

When you have neurosarcoidosis, you likely also have sarcoidosis in other organs. Neurologists work with additional specialists to coordinate the therapies you need so that you can focus on healing. Find out more about our multidisciplinary sarcoidosis clinic.

Neurosarcoidosis evaluation

We tailor your assessment depending on whether you already have a sarcoidosis diagnosis:

Evaluation in people with sarcoidosis

If you have sarcoidosis and start experiencing neurologic symptoms, it’s important to determine their cause. An accurate diagnosis requires tests to rule out other neurologic conditions and depth of experience interpreting them.

After performing a neurological exam, we coordinate additional evaluations. The options that are right for you depend on neurosarcoidosis symptoms and may include:

• Lumbar puncture to take a sample of spinal fluid and check it for signs of inflammation
• MRI of the brain or spinal cord, which helps us pinpoint the location of swelling and damage

Additional tests for people who do not have a sarcoidosis diagnosis

We perform a CT scan of the chest since this is the most common place granulomas form. If the scan is positive, you undergo a procedure to access your airways (bronchoscopy) so we can take a tissue sample (biopsy). If biopsy results confirm a sarcoidosis diagnosis, neurological symptoms are likely due to neurosarcoidosis.

Neurosarcoidosis treatment

Timely therapy relieves symptoms and lowers the risk of organ damage. You may need:

• Steroids to reduce inflammation. For severe cases, you may need a high dose via infusion. In some cases, it’s necessary to be on these drugs for an extended period.
• Immunosuppressants quiet immune system attacks. There are many options. We collaborate with other sarcoidosis specialists to determine the best one for your needs.

Contact us

Learn more about neurosarcoidosis care. Call us at (800) 436-7936 or request an appointment.