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Genetic and Rare Diseases Information Center (GARD)

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Central pontine myelinolysis


* Not a rare disease
Other Names for this Disease
  • CPM
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Your Question

I was diagnosed with central pontine myelinolysis by the Cleveland Clinic. I'm only two weeks out from the start of symptoms. I'm worried because I don't know the progression of this disease. I'm worried that I might still develop new issues. I'm concerned I might still go into a locked-in state. I want to know what are the statistics for this disease - how many people recover?  How many people get worse? What's the time frame that they get worse in?  Is there any treatment?  Is there a support group?  Are there any doctors who specialize in this type of neurological dysfunction?

Our Answer

We have identified the following information that we hope you find helpful. If you still have questions, please contact us.

What is central pontine myelinolysis? 

Central pontine myelinolysis (CPM) is a neurological disorder that most frequently occurs when sodium deficiency is treated too rapidly.  The part of the brain called the pons is especially sensitive and too much sodium can damage nerve fibers.  Initial signs and symptoms appear within two to three days and include a depressed level of awareness, difficulty speaking, and difficulty swallowing.  Additional symptoms often occur in the next one to two weeks, including impaired thinking, weakness or paralysis in the arms and legs, stiffness, impaired sensation, and difficulty with coordination.  Severe CPM can lead to coma, “locked-in” syndrome, and death.[1] Treatment is focused on safely restoring sodium levels and relieving symptoms.[1] Many affected people improve over weeks to months; however, some have permanent disability or develop new symptoms later on including behavioral or intellectual impairment or movement disorders like parkinsonism or tremor.[1]
Last updated: 7/21/2011

What are the possible outcomes following a diagnosis of central pontine myelinolysis?

During the initial onset of central pontine myelinolysis (CPM), one study reports that approximately 70% of individuals with CPM experience disturbances in consciousness; approximately 40% have difficulty swallowing or speaking; 33% have weakness in their limbs or rarely "locked-in syndrome"; and 25% have seizures.[2]  Another study on long-term outcome following a diagnosis of CPM described 32 patients.  Of these, one third completely recovered, one third had some persistent effects but lived independently, and one third had significant effects such that they needed supportive care.  Of the ten patients who remained dependent on supportive care, four had problems with thinking or memory, three had weakness in both arms and both legs (tetraparesis), two had difficulty controlling movement (ataxia), and one had nerve disease (polyneuropathy).[3] 
Last updated: 7/21/2011

What treatments are available for central pontine myelinolysis?

Unfortunately, there is no treatment of choice for central pontine myelinolysis.  Four treatments have been tried in a small number of patients with encouraging results; however, these are experimental and none has been proven effective by a clinical trial.  The four experimental treatments include plasmapheresis, which is a procedure that attempts to remove toxic substances from the blood; thyrotropin-releasing hormone (TRH), which may help damaged tissues in the brain by increasing the blood supply to these areas; corticosteriods, which are medications that may suppress potentially harmful immune responses; or immunoglobulin therapy, which is also thought to remove toxic substances from the blood. [2]  Supportive therapy to address the symptoms of this condition include physical therapies and rehabilitation.[1]
Last updated: 7/21/2011