Isaacs' syndrome

What causes Isaacs' syndrome?

The exact cause of Isaacs' syndrome is poorly understood. There appear to be hereditary and acquired (non-inherited) forms of the condition. The acquired forms are often associated with malignancies, peripheral neuropathies, and a variety of autoimmune disorders of the nervous system.

Last updated on 05-01-20

How is Isaacs' syndrome diagnosed?

A diagnosis of Isaacs' syndrome is often suspected based on the presence of characteristic signs and symptoms. Additional testing can then be ordered to confirm the diagnosis, evaluate for associated conditions (i.e. malignancies and autoimmune disorders) and rule out other disorders that may cause similar features. This testing may included:

  • Specialized laboratory studies on blood and/or urine
  • Imaging studies such as a CT scan or MRI scan
  • Electromyography which checks the health of the muscles and the nerves that control them.

Last updated on 05-01-20

What is the long-term outlook for people with Isaacs' syndrome?

The long-term outlook (prognosis) for people with Isaacs' syndrome varies and largely depends on the underlying cause. In general, there is no cure for the condition although it is generally not fatal.

Last updated on 05-01-20

How might Isaacs' syndrome be treated?

The treatment of Isaacs' syndrome is based on the signs and symptoms present in each person. For example, anticonvulsant medications such as phenytoin and carbamazepine may be prescribed to relieve stiffness, muscle spasms, and pain. Plasma exchange may provide short-term relief for people with some forms of acquired Isaacs' syndrome. Plasma exchange is a method by which whole blood is removed from the body and processed so that the red and white blood cells are separated from the plasma (liquid portion of the blood). The blood cells are then returned to the patient without the plasma, which the body quickly replaces. If there is no response or poor response to plasma exchange, some studies suggest that intravenous infusions of immunoglobulins (IvIg therapy) may be beneficial.

Last updated on 05-01-20

Connect with other users with Isaacs' syndrome on the RareGuru app

Do you have information about a disease, disorder, or syndrome? Want to suggest a symptom?
Please send suggestions to RareGuru!

The RareGuru disease database is regularly updated using data generously provided by GARD, the United States Genetic and Rare Disease Information Center.

People Using the App

Join the RareGuru Community

To connect, share, empower and heal today.

People Using the App