Sarcoidosis is a chronic inflammatory disease that affects various parts of your body or internal organs. It’s most commonly seen in the lungs or lymph nodes, but it can affect several different organs in the body.
Neurosarcoidosis is when this inflammatory disease affects your nervous system, such as your brain or spinal cord. It may also be called neurologic sarcoidosis. Less than 15 percent of people with sarcoidosis will develop neurosarcoidosis.
The symptoms of neurosarcoidosis tend to be similar to the symptoms of multiple sclerosis (MS) or transverse myelitis. This is because neurosarcoidosis also damages the myelin coating around the nerve fibers.
To tell the difference and to diagnose neurosarcoidosis, doctors perform one or more of the following tests:
- chest X-ray, specifically of the lungs
- CT scan
- blood tests
These tests or scans are the main ways for doctors to determine if your symptoms are from MS or neurosarcoidosis. Your doctor needs a correct diagnosis to decide the best treatment for you.
The symptoms vary for neurosarcoidosis based on what areas of the body are affected by the inflammation in the brain. Some symptoms will look similar to multiple sclerosis, depending on the affected areas.
If it affects the brain or cranial nerves, you may have:
- inability or change in your ability to smell or taste
- loss of hearing
- speech difficulties
- psychiatric issues
- palsy in the facial muscles
- double vision or other vision issues
If it affects the peripheral nerves, you may have:
- tingling and numbness
- weak muscles
- inability to move some parts of the body
If the neurosarcoidosis affects the pituitary gland, you may have:
- extreme thirst
- the need to urinate frequently
- severe tiredness
- menstrual cycle changes (in women)
These symptoms can occur abruptly or appear slowly over time. Symptoms usually start when a person is between the ages of 20 and 40 years. It also seems to occur more often in people of African-American or Swedish decent.
It can be challenging to diagnose neurosarcoidosis because different areas can be affected and different symptoms occur with each area. Your doctor will usually rule out other possible reasons for your symptoms before coming to a diagnosis of neurosarcoidosis.
The specific cause of neurosarcoidosis is not known. However, researchers and medical professionals believe it may be caused by a combination of risk factors. Those factors may include:
- environmental factors
- certain infections
- disorders of the immune system
There is currently no cure for neurosarcoidosis, and treatments vary based on symptoms and severity.
Your doctor may prescribe corticosteroids. These help reduce the inflammation, which may help reduce your symptoms severity.
Other treatments may include:
- immunomodulatory medications
- immunosuppressive medications
- occupational therapy
- physical therapy
- pain management medications or therapy
The medications used for treatment can have severe negative side effects that you should discuss with your doctor before you take them. The doctor will help you determine if the risk of side effects is worth the possible benefits of taking the medication.
Life expectancy and prognosis
There isn’t a standard prognosis for neurosarcoidosis because the condition differs from person to person. Some people have symptoms that may get progressively worse throughout their lifetime. However, about two-thirds of people with this condition experience remission.
Remission means that the symptoms go away. The majority of people who go into remission go on to live normal lives. Those who do not experience remission will need to manage their symptoms and continue treatments throughout their lives.
Some of the medications that can be used for treatment have serious side effects. In a small percentage of people, these side effects may include death. You should discuss all medications and their side effects with your doctor before taking them.
Because the symptoms of neurosarcoidosis mimic other conditions, it’s important to do any diagnostic tests your doctor requests to get a correct diagnosis. Many of these tests or scans involve radiology. Be sure to discuss any concerns you may have about the tests with your doctor.
After diagnosis with neurosarcoidosis, you should regularly see a neurologist who is experienced in treating this condition. They can help you determine the best treatment for you. They will also coordinate with other doctors and therapists involved in your care. This will ensure the best outcome for you.