Living with HTLV-1-associated myelopathy-tropical spastic paraparesis
A nervous system disease that affects less than 2% of people with HTLV-1 infection, causing leg weakness and stiffness.
Understanding HTLV-1-associated myelopathy-tropical spastic paraparesis
It affects less than 2% of people with HTLV-1 infection. Why some people develop it is not well understood. It most often begins in adults. Signs include slowly worsening weakness and stiffness in one or both legs and lower back pain. Some people have urinary incontinence and minor changes in sensation.
Signs & symptoms
Symptoms vary from person to person. GARD's summary describes these:
- Slowly worsening leg weakness
- Stiffness in the legs (spasticity)
- Exaggerated reflexes
- Lower back pain
- Urinary incontinence
- Burning or prickling feelings
Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.
Diagnosis
- 1Talk with your doctor
Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.
- 2See a specialist
Specialists who may be involved include brain and nervous system specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
National Multiple Sclerosis Society may keep lists of experts for this condition.
Care & treatment
- Care team
- Brain and nervous system specialists (neurologists)
- Expert care
- Expert lists: National Multiple Sclerosis Society
- Treatment
- GARD doesn't list specific treatments for this condition. Your care team will tailor care to your symptoms.
- Research
- Clinical trials and observational studies may be options. See the research section below.
General information, not medical advice. Your care team makes the decisions.
Everyday life
Living with a rare condition is easier with support.
- Connect with National Multiple Sclerosis Society
- Keep notes on symptoms, changes and questions for appointments
- Ask about patient registries that help research
- Look into financial aid and travel resources for care visits
Quick facts
It is linked to HTLV-1 infection, though GARD says the reason some people with the infection develop it is not well understood.
Also known as: familial spastic paraparesis, htlv-1-associated; ham; ham/tsp; htlv-1-associated myelopathy/tropical spastic paraparesis; htlv-associated myelopathy; htlv-i-associated myelopathy
Patient organizations
- National Multiple Sclerosis SocietyHTLV-1-associated myelopathy-tropical spastic paraparesis · United States
You are more than your diagnosis
Perspectives from people navigating life with HTLV-1-associated myelopathy-tropical spastic paraparesis.
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