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Neurosarcoidosis is a form of sarcoidosis, a chronic inflammatory disorder additionally characterized by granulomas, that affects parts of the nervous system. Myelin, the "lining" of nerves, can be damaged by the condition, disrupting daily functioning. The brain, spinal chord, and peripheral nerves may all be impacted by neurosarcoidosis, and the hypothalamus, pituitary gland, and cranial and facial nerves are particularly likely to suffer.  

Neurosarcoidosis Symptoms

The symptoms a person with neurosarcoidosis will experience depend on the exact parts of the nervous system affected by the condition.

Where the brain and cranial nerves are impacted, a patient may experience headaches, an altered sense of smell, hearing, and vision, and altered speech. Bell's palsy, wherein your facial muscles droop, is also possible, along with mental and cognitive symptoms including memory loss, irritability, confusion, and delirium. People with neurosarcoidosis may be dizzy and can have seizures. 

Extreme fatigue, thirst, and urinary urgency are common symptoms in people with neurosarcoidosis whose pituitary gland has been affected, and women may notice menstrual changes. 

If the peripheral nerves have been attacked by neurosarcoidosis, weakened muscles, loss of mobility, and tingling sensations are likely symptoms. 

It is important to note that the symptoms of neurosarcoidosis may have a sudden onset or develop gradually over time. This and the fact that symptoms will vary from one person to the next depending on the areas of the nervous system impacted by the condition can make neurosarcoidosis a true diagnostic challenge for physicians — and a real nightmare for patients as they wait for the correct diagnosis. 

What Is The Prognosis For Neurosarcoidosis? What About Life expectancy?

Because there is currently no cure for neurosarcoidosis, treatment will focus on managing the symptoms as needed. Patients have quite a high chance of going into complete remission and spontaneously ceasing to experience symptoms — two thirds of people with neurosarcoidosis do. Those who do not may experience progressively worsening symptoms, or encounter on-again, off-again symptoms. 

In this case, medications will be prescribed. They often include corticosteroids and Prednisone to fight the inflammation involved in neurosarcoidosis, and can also include immunomodulatory (hydroxychloroquine or thalidomide, for example) and immonusupressive (cyclosporin, for example) medications. Though designed to combat your symptoms, these medications can also cause side effects in themselves. 

Complications of neurosarcoidosis include:

  • Progressive multifocal leukoencephalopathy — an extremely serious and life-threatening neurological disease. 
  • Inclusion body myositis — which features progressive weakening of the muscles. 
  • Cryptococcal and tuberculous meningitis.

These complications of neurosarcoidosis prove fatal in a small subset of patients. 

What Now?

Neurosarcoidosis simply isn't one of those diseases you manage to correctly self-diagnose after searching for possible causes of your symptoms on the internet. Those reading this have most likely been diagnosed, or have a loved one diagnosed with neurosarcoidosis. People with neurosarcoidosis should regularly see a neurologist and work with them with regard to managing their symptoms. They should let their physician know if their medications are causing serious side effects so that new medications may be tried, and always sound the alarm if new neurological symptoms start occurring. 

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