National Center for Advancing and Translational Sciences Genetic and Rare Diseases Information Center, a program of the National Center for Advancing and Translational Sciences

Acute disseminated encephalomyelitis

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One of my relatives was diagnosed with acute disseminated encephalomyelitis in 1997. Due to poor medical care, he has not received consistent treatment and his health has deteriorated over the years. He is now completely paralyzed. Is it too late for treatment to be effective? What is the prognosis for an individual who has not been treated promptly?

The following information may help to address your question:


How might acute disseminated encephalomyelitis (ADEM) be treated?

Treatment for ADEM aims to suppress inflammation in the brain. Treatment is usually comprised of anti-inflammatory medications. Most individuals respond well to intravenous corticosteroids, such as methylprednisolone. When corticosteroids fail to work, plasmapheresis or intravenous immunoglobulin therapy may be utilized.[1]
Last updated: 8/16/2016

What is the long-term outlook for people with acute disseminated encephalomyelitis (ADEM)?

The long-term outlook (prognosis) for people with ADEM varies. Most people begin to recover within days, with total or near-total recovery within a few months. Rarely, there may be some lifelong neurological impairment. Very rarely, ADEM can be fatal.[1] 

ADEM may recur in some cases, and if it does, it is usually within months of the initial episode. Recurrences are typically treated by restarting corticosteroids. A small proportion of people initially diagnosed with ADEM will go on to develop multiple sclerosis (MS). Unfortunately, there is no way to predict who will develop MS.[1] The risk for MS appears to be highest in children with ADEM who had no fever, triggering infection, or recent immunization.[2]
Last updated: 7/26/2017

Is it too late to start proper treatment in order to reverse or stabilize my relative's health?

Although we haven't been able to locate any studies which discuss the usefulness of delayed treatment, corticosteroid therapy has been shown to shorten the duration of neurological symptoms and halt further progression of the disease in general.[1] We recommend that you discuss your concerns with a healthcare provider familiar with the details of your relative's case. 
Last updated: 8/16/2016

What is the prognosis for individuals with acute disseminated encephalomyelitis (ADEM) who do not receive treatment in a timely manner?

Early treatment one of the most important factors to determine the prognosis for individuals with ADEM.[3] However, it is not known whether any available form of treatment effects the time to recovery or the risk for complications.[2]
Last updated: 8/16/2016

We hope this information is helpful. We strongly recommend you discuss this information with your doctor. If you still have questions, please contact us.

Warm regards,
GARD Information Specialist

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  1. NINDS Acute Disseminated Encephalomyelitis Information Page. National Institute of Neurological Disorders (NINDS). https://www.ninds.nih.gov/Disorders/All-Disorders/Acute-Disseminated-Encephalomyelitis-Information-Page. Accessed 7/26/2017.
  2. Brenton JN. Acute Disseminated Encephalomyelitis. Medscape Reference. Dec 19, 2016; http://emedicine.medscape.com/article/1147044-overview#showall.
  3. Tosun A, Serdaroglu G, Polat M, Tekgul H, Gokben S. Evaluation of the cases with acute disseminated encephalomyelitis. Indian J Pediatr. 2009; http://www.ncbi.nlm.nih.gov/pubmed/19390813.