Neurosarcoidosis FAQs

Is neurosarcoidosis fatal?

Early reports suggested that once sarcoid got into the nervous system very little could be done about it. Frequently, as a result of this, a lack of understanding that the disease did affect the nervous system and a lack of treatment, it often was. Nowadays it is clear that with prompt and vigorous treatment such as that outlined on these pages, the prognosis for an improvement in the condition is now very good, and indeed many recover well.

At the Royal Free Hospital we have looked after over 100 patients with the disease and only two have died, neither directly related to the condition itself.

Can neurosarcoidosis occur without evidence that sarcoid has affected other tissues in the body?

Yes it can, and we do not currently understand the reasons for this. It is likely to be related to the type of immune system the patient is born with and what the trigger is which sets off the disease; if it goes for the lungs then the lungs will be affected, and so on.

Is it like MS?

Multiple Sclerosis (MS) is another disease caused by inflammation within the nervous system but it is a very different disease and requires very different treatment. It is thus important for the neurologist to distinguish between the two diseases early on in order to select the best treatment. Like any disease, both MS and neurosarcoidosis can be mild or severe, with different treatments, prognoses and outcomes.