Neurosarcoidosis

Sarcoidosis

What is neurosarcoidosis?

Neurosarcoidosis is a complication of sarcoidosis, in which inflammation occurs in the brain, spinal cord, and other areas of the nervous system.

What causes neurosarcoidosis?

Sarcoidosis is a long-term disorder that affects many parts of the body, mostly the lungs. In a small number of patients, the disease involves some part of the nervous system. This is called neurosarcoidosis. However less than 15% of sarcoidosis patients will develop neurosarcoidosis.

What are the symptoms of neurosarcoidosis?

In order to diagnose neurosarcoidosis, doctors perform one or more of the following tests:

chest X-ray, specifically of the lungs
CT scan
blood tests
biopsy

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 descent.

There is currently no cure for neurosarcoidosis, however there are treatments that will help reduce the inflammation, which will soothe the symptoms and make you more comfortable. Such as:
Corticosteroids
Occupational Therapy
Immunomodulatory medications
Immunosuppressive medications
Occupational therapy
Physical therapy
Pain management medications or therapy

Are you affected by Neurosarcoidosis?

If you’re affected by neurosarcoidosis, The Brain Charity can support you.

We are the only charity in the UK to be here for every one of the more than 600 different neurological conditions in existence. Individually, many are rare, but combined, they affect 1 in 6 people.

We provide practical help on all aspects of living with neurosarcoidosis, emotional support such as counselling, phone befriending and group therapy and social activities to people with neurosarcoidosis from all over the UK from our centre in Liverpool.

Looking to talk to someone?

Phone us

Contact The Brain Charity now

Our friendly Information & Advice Officers are here to help. We endeavour to respond to all enquiries within 10 working days.

0800 008 6417

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Caring for someone affected by Neurosarcoidosis

Helping to apply the Corticosteroids to the affected area will help make your loved one more comfortable and ease their pain.

Make sure you look after yourself as much as you look after them. If you need any assistance, or just need a friendly chat, we have lovely counsellors who can take your call.

We support carers, friends and family too

Are you a carer for or relative of someone with neurosarcoidosis? It’s just as important for you to look after your own physical and mental wellbeing too.

The Brain Charity provides free support for carers, friends and family of people with any form of neurological condition, including neurosarcoidosis, from anywhere in the UK.

We also run an additional carers advocacy service for all carers in Liverpool, regardless of which type of condition the person they care for has.

You don’t need to be a formal or registered carer

We can help you even if you don’t view yourself as a formal carer or claim Carer’s Allowance. Find out some of the ways we support carers below.

Other resources

The Brain Charity's library

The library at The Brain Charity has a range of resources on neurosarcoidosis and on a wide range of disability-related issues.

Visit our library to read our copy of the Sarcoidosis journal article “Neurosarcoidosis” by Elizabeth Graham and D. Geraint James.

Sarcoidosis Overview by SarcoidosisUK Pamphlet, 2020

Sarcoidosis and the nervous system by SarcoidosisUK Pamphlet, 2020

Support groups

Other charities

SarcoidosisUK