HTLV-1 myelopathy (tropical spastic paraparesis)

Overview

HTLV-1 spreads through breastfeeding, blood, and sex.

Only a small number of people with the virus develop spinal cord disease.

Symptoms

Common signs:

• Stiff, weak legs

Less common

• Bladder problems

Look up a symptom: Muscle weakness in arms or legs · Numb or tingling leg or foot

When to get medical care

Causes

HTLV-1.

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

• Born in Caribbean, Japan

Diagnosis

A clinician asks about your symptoms and may order tests.

The exam

A physical exam.

Tests

Tests, if needed:

• Blood test:
• MRI:

Treatment

Treatment depends on the cause and how severe it is.

Self-care

• Physical therapy

Prevention

To lower your risk or prevent problems:

• Safe sex
• Screening of donated blood

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) or a spine surgeon.

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

• People from the Caribbean, Japan, or parts of Africa and South America: 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.

Outlook

Therapy helps mobility.

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?

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 HTLV-1 myelopathy (tropical spastic paraparesis)