Sarcoidosis is an inflammatory disease that forms tiny clumps of immune cells called granulomas, usually in the lungs and lymph nodes. In about 5 to 10 in 100 patients it involves the nervous system, which is called neurosarcoidosis.
It can affect cranial nerves, the brain lining, the pituitary, the spinal cord or peripheral nerves. It usually responds to immune treatment, but diagnosis is difficult and relapses are common when treatment is reduced.
Symptoms
- Facial weakness, sometimes on both sides
- Double vision, visual loss or hearing loss
- Persistent headache
- Excessive thirst and hormonal problems from pituitary involvement
- Leg weakness, numbness and bladder symptoms from spinal cord inflammation
- Seizures
- Painful burning feet from small fibre neuropathy
Causes and risk factors
The cause of sarcoidosis is unknown. It appears to be an exaggerated immune reaction to an unidentified trigger in genetically susceptible people. It is not infectious and not a cancer. Neurological involvement may be the first sign of the disease or may arise in someone with known lung, skin or eye sarcoidosis.
How it is diagnosed
- MRI with contrast: Shows enhancement of the meninges, cranial nerves or a long spinal cord lesion.
- Lumbar puncture: Typically shows raised protein and white cells, and helps exclude infection and lymphoma.
- Chest CT and PET-CT: Search for disease elsewhere in the body that is easier to biopsy.
- Biopsy: Tissue showing non-caseating granulomas is needed for a definite diagnosis; brain biopsy is a last resort.
- Blood tests: ACE level is unreliable alone; tests to exclude tuberculosis are essential before immunosuppression.
Treatment options
- Corticosteroids: First-line therapy, usually a high dose tapered over months.
- Steroid-sparing agents: Methotrexate, azathioprine or mycophenolate.
- Infliximab: A TNF inhibitor that is effective in severe or resistant disease.
- Hormone replacement: For pituitary failure.
- Treatment of complications: A shunt for hydrocephalus; anti-seizure medication.
When it is urgent
Rapid loss of vision, new leg weakness with bladder problems, severe headache with drowsiness, or seizures need emergency hospital care locally.
Travelling to Türkiye for treatment
A visit suits diagnostic work-up, including PET-CT and a targeted biopsy, or a second opinion on treatment escalation. Immunosuppression runs for years with blood monitoring and infection surveillance, which has to be local.
Send your reports, scans and a short history and a Clinic-Y coordinator replies within 24 hours with suitable teams and written, all-inclusive proposals side by side. Reviewing your case is free.
الأسئلة المتكررة
Can it be diagnosed without a biopsy?
Only as probable or possible. Doctors try hard to obtain tissue from a lymph node, the skin or the lung.
How long is treatment?
Often 1 to 2 years or more, with slow tapering to avoid relapse.
Does facial palsy from sarcoidosis recover?
Usually well, more so than involvement of the spinal cord or optic nerve.