What you should know about neurosarcoidosis
Sarcoidosis usually affects the lungs, although it can affect almost any organ. When it affects the nervous system, the condition is called neurosarcoidosis.
According to the Foundation for Sarcoidosis, symptoms of neurosarcoidosis can come on suddenly or develop slowly.
- Inflammation of the brain characterizes the condition.
- Usually, it affects the facial and cranial nerves in the brain.
- Currently, there is no cure, but there are treatments that may reduce symptoms.
What are the symptoms?
Neurosarcoidosis is a form of sarcoidosis where the nervous system is affected.
The symptoms may vary depending on what part of the brain is affected by the inflammation.
Though it usually affects nerves in the face and skull, neurosarcoidosis can also affect the pituitary gland, peripheral nerves, and the hypothalamus area of the brain.
Symptoms may include:
- Bell's palsy, leading to one-sided weakness of the facial muscles
- double vision
- hearing loss
- speech problems
- memory loss
- changes in mood
If the pituitary gland is affected, additional symptoms can occur, including:
- frequent urination
- excessive thirst
There is no standard for treatment of neurosarcoidosis. Treatment options may include any one or combination of the following:
In the short term, narcotic pain medication may be prescribed.
Corticosteroids are often prescribed to treat neurosarcoidosis. The drugs work by decreasing inflammation in the brain, which reduces the symptoms. For the treatment of neurosarcoidosis, corticosteroids are usually taken by mouth.
Steroids are often prescribed in a high dose at first. After symptoms have decreased, the dosage is gradually reduced.
Although steroids are the first-line of treatment for neurosarcoidosis, the drugs can cause many side effects, especially if taken for a long time.
Side effects of steroids can include bone loss, increased blood sugar, and a decreased immune system. Weight gain, mood swings, and problems sleeping can also occur.
If steroids are not effective or cannot be used, immunosuppressive medications may be prescribed.
Immunosuppressant drugs work by preventing cell growth and decreasing the activity of the immune system.
People who take this type of medication are at an increased risk of developing an infection.
Inflammation of certain nerves can be painful and may be treated with pain medication.
Pain medication may include narcotic drugs, which can also cause side effects, such as nausea, dry mouth, and sleepiness.
Narcotic pain medication can also be habit-forming and is usually only prescribed in the short term.
Anti-seizure drugs are another form of medication that can be used to treat people with neurosarcoidosis.
Radiation therapy may occasionally be recommended to treat masses or growths caused by neurosarcoidosis, although it is not used as often as medication.
Masses can develop due to inflammation. Targeted radiation may be used in instances where the masses do not respond to other treatment, such as steroids.
Occupational and physical therapy
All of the brain symptoms caused by neurosarcoidosis may lead to problems with daily living.
Someone with neurosarcoidosis may find that occupational and physical therapy may help improve their functioning and quality of life.
Treatment for neurosarcoidosis may involve a combination of the above options.
The quest for treatments to minimize symptoms with few side effects is continually being researched.
Causes vs. multiple sclerosis
A diagnosis is not always easy, and neurosarcoidosis can be mistaken for other conditions, including multiple sclerosis.
In people with multiple sclerosis, something triggers the immune system to attack the brain. Signals to and from the brain become disrupted.
Many of the same symptoms of multiple sclerosis also occur with neurosarcoidosis, which can make diagnosis tricky.
In some cases of neurosarcoidosis, symptoms of systemic sarcoidosis are present, such as painful joints, swollen lymph nodes, and pain in the feet and hands.
It is easier to tell the difference between multiple sclerosis and neurosarcoidosis when general symptoms of sarcoidosis occur.
Certain symptoms, such as hallucinations, may also point away from multiple sclerosis.
Because of the similar symptoms, various tests are usually needed to make a diagnosis. But there is not one specific test to diagnose neurosarcoidosis.
Doctors may do several tests to rule out multiple sclerosis and other brain disorders. Various types of imaging tests, such as computed tomography (CT) or magnetic resonance imaging (MRI), for example, may be performed to check for nerve inflammation. They may also test a person's cerebrospinal fluid.
A CT or MRI scan may be performed to rule out multiple sclerosis and other brain disorders.
The outlook for people with neurosarcoidosis varies. Many people recover and lead active lives, although it can take months.
According to the National Institute of Neurological Disorders and Stroke, about two-thirds of people with neurosarcoidosis recover completely. But about one-third of people with the condition have symptoms for a lifetime. The severity of their symptoms may come and go.
Certain patterns of symptoms help doctors predict the outcome.
For instance, when symptoms, such as chronic meningitis and seizures occur, as the disease progresses, it can be a sign that it will be harder to treat.
There is not a specific life expectancy predicted for people with neurosarcoidosis.
In a small number of cases, complications from treatment can be fatal. For instance, medications that suppress the immune system can lead to life-threatening infections, such as meningitis and pneumonia.
People diagnosed with neurosarcoidosis often need to see their doctor regularly to monitor the condition. Frequent imaging tests and blood work may also be needed to determine the presence of inflammation. In some cases, medication is needed for a lifetime.
Early diagnosis of the condition allows for prompt treatment and may improve the outcome.