Osmotic demyelination (central pontine myelinolysis)

Overview

It happens when very low sodium is corrected too fast.

Hospitals raise sodium slowly to prevent it.

Symptoms

Common signs:

• Trouble speaking or swallowing
• Weakness

Less common

• Confusion

Look up a symptom: Muscle weakness in arms or legs · New confusion or not acting like themselves

When to get medical care

Causes

Fast sodium change.

Does it spread or run in families?

• It isn't contagious. You can't catch it from someone else.

Who is more likely to get it

• Alcohol use
• Malnutrition

Possible complications

• Locked-in syndrome: In severe cases

Diagnosis

This is diagnosed in the emergency room or hospital.

The exam

A physical exam.

Tests

Tests, if needed:

• MRI:

Treatment

Emergency care is needed. While waiting for help:

Self-care

• Get emergency care

Prevention

To lower your risk or prevent problems:

• Slow sodium correction

Which doctor treats this

• Emergency doctors treat it first, in the ER.
• They may send you to a neurologist (brain and nerve doctor).

Living with it

Support groups and helplines

• Genetic and Rare Diseases Information Center (GARD): Free NIH information on rare diseases, including where to find experts and patient groups.
• National Organization for Rare Disorders (NORD): Patient groups, help finding care, and aid programs for rare diseases.

Back to school, work, or sports

• Recovery time varies. Ask your care team when you can drive, lift, work, and exercise.

Children, pregnancy, and older adults

• People with alcohol use disorder: Higher risk.

Pregnancy and breastfeeding

• If you're pregnant or planning to be, tell your prenatal provider about this condition.
• Don't start or stop any medicine on your own. Some are safe in pregnancy and some need to be changed.
• Ask before taking any pain reliever. The FDA advises avoiding ibuprofen and naproxen after 20 weeks unless your doctor says to.
• Breastfeeding: Most medicines are fine, but ask. The NIH LactMed database lists what's known about each one.

For caregivers

• Go to visits when you can and take notes.
• Keep a list of medicines, allergies, and doctors in one place.
• Learn the warning signs that need fast care.
• Learn CPR. Many hospitals and the Red Cross offer classes.
• Take breaks and ask for help. Caregivers need care too.

Outlook

Some recover over months.

Getting ready for your visit

Bring a list of your symptoms and medicines.

What to bring

• A list of your medicines and supplements
• Notes on when symptoms started and what makes them better or worse

Questions to ask

• What follow-up care do I need?
• How can I prevent this from happening again?

Research studies

Research studies test new ways to find and treat health problems. Some are looking for volunteers. Talk with your doctor before joining one.

Search ClinicalTrials.gov for studies on Osmotic demyelination (central pontine myelinolysis)