Moyamoya disease

Overview

Moyamoya means 'puff of smoke' in Japanese, describing small vessels seen on scans.

Crying or hyperventilating can trigger symptoms in children.

Symptoms

Common signs:

• Stroke signs

Less common

• Headaches

Look up a symptom: Headache · Muscle weakness in arms or legs · Staring spells or losing time

When to get medical care

Causes

Unknown.

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

• East Asian heritage

Diagnosis

A clinician asks about your symptoms and may order tests.

The exam

A physical exam.

Tests

Tests, if needed:

• MRI:

Treatment

Treatment depends on the cause and how severe it is.

Self-care

• Stay hydrated
• Drink fluids
• Avoid hard breathing

Which doctor treats this

• Start with your primary care provider (family doctor or internist).
• 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.

Children, pregnancy, and older adults

• Children: Can have TIA-like spells.
• Children and adults 30 to 50: Two peaks.

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.

Outlook

Surgery lowers stroke risk.

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's causing this?
• What treatment do you recommend?
• Is bypass surgery right for me?

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 Moyamoya disease