Neurosarcoidosis is the name we give sarcoidosis when it affects the nervous system. Sarcoidosis is an inflammatory disease in which small clusters of immune cells, called granulomas, form in the body’s organs — most often the lungs, but sometimes the brain, spinal cord and nerves.
Neurosarcoidosis is one of the most underdiagnosed conditions in neurology, because it can imitate almost any other neurological problem. The encouraging news is that, once recognised, neurosarcoidosis usually responds well to treatment that calms the immune system — and for many people the inflammation can be brought under lasting control.
What is neurosarcoidosis?
Sarcoidosis affects the nervous system in a minority of people who have it — and occasionally the nervous system is the first or only site involved. Because granulomas can form almost anywhere in the brain, spinal cord, the coverings of the brain (meninges) or the nerves, the symptoms vary widely.
How neurosarcoidosis can present
😐 Cranial nerve problems
Facial weakness (the most common sign), or visual loss from optic nerve involvement.
🤕 Meningitis-like inflammation
Headaches and inflammation around the base of the brain.
💧 Hormonal problems
If the pituitary or hypothalamus is involved (for example excessive thirst and urination).
🦴 Spinal cord inflammation
Weakness, numbness, bladder symptoms.
⚡ Seizures or brain lesions
Granulomas in the brain can cause seizures or appear as lesions on imaging.
🦵 Peripheral nerve or muscle involvement
Including small-fibre nerve symptoms.
How neurosarcoidosis is diagnosed
Diagnosis takes careful detective work, because no single test is definitive:
🧲 MRI of the brain and spinal cord
MRI (magnetic resonance imaging) often shows inflammation of the meninges or specific lesions.
💧 Lumbar puncture (CSF)
Cerebrospinal fluid (CSF) shows inflammation, raised protein, sometimes oligoclonal bands.
🩻 Body imaging
CT chest and FDG-PET to find sarcoidosis elsewhere (such as in lymph nodes or the lungs) that can be safely biopsied.
🔬 Biopsy
Confirming non-caseating granulomas, usually from an accessible site outside the nervous system.
🚫 Tests to exclude mimics
Particularly infections (such as tuberculosis) and lymphoma.
Why a specialist matters: because neurosarcoidosis mimics so many conditions — including MS, infection and cancer — reaching the right diagnosis often needs a neurologist who combines the imaging, spinal fluid and biopsy findings into one picture.
Treatment
Treatment aims to switch off the inflammation and protect nerve function:
💊 Corticosteroids
The usual first-line treatment, often starting higher and reducing over time.
🔁 Steroid-sparing immunosuppressants
Methotrexate, azathioprine or mycophenolate, to allow steroids to be lowered.
🧬 TNF inhibitors
Biologics such as infliximab for more severe or treatment-resistant disease (TNF = tumour necrosis factor).
🩺 Supportive care
Managing hormones, seizures or hydrocephalus where these occur.
Reassuring: most people with neurosarcoidosis respond to treatment, and many achieve long-term control of the inflammation with a well-planned, monitored regimen.
Outlook
Neurosarcoidosis varies from a single, self-limited episode to a chronic condition needing long-term treatment. With modern immunotherapy and careful monitoring, the outlook for most people is good, and treatment is adjusted over time to keep side effects low.
Neurosarcoidosis care at East Neurology
Dr Tal Koren assesses and manages neurosarcoidosis at East Neurology in Bondi Junction — coordinating MRI, spinal fluid testing, body imaging and biopsy where needed, and planning immunotherapy with monitoring. He works alongside Dr Ron Granot and the wider team, and with respiratory and other specialists when sarcoidosis affects more than the nervous system.
Frequently asked questions
Is neurosarcoidosis cancer?
No. It is an inflammatory condition, not a cancer — although part of the diagnostic process is making sure other causes, including cancer and infection, are excluded.
Do I have to have lung sarcoidosis to get neurosarcoidosis?
Not always. The nervous system can be the first or only site affected, although finding sarcoidosis elsewhere in the body can help confirm the diagnosis.
Will I need treatment forever?
Some people need only a course of treatment; others need longer-term therapy to keep the inflammation controlled. The plan is tailored to you and reviewed regularly.
Related reading
- Neuroimmunology — overview of conditions and team
- Multiple sclerosis
- Dr Tal Koren — Consultant Neurologist (Neuroimmunology)
External resources
- Foundation for Sarcoidosis Research — information and support
This page is general information about neurosarcoidosis and is not personal medical advice. Please contact the practice to discuss your individual situation.
Book an appointment
To arrange a consultation about neurosarcoidosis with Dr Tal Koren, ask your GP or specialist for a referral, then get in touch — new patients and second opinions are welcome.
Or call 02 9388 0615. East Neurology is a private specialist practice focused on expert diagnosis and prompt results; your Medicare rebate is processed for you on the day.