Living with Primary orthostatic tremor
A rare movement disorder with a fast tremor in the legs and trunk that causes unsteadiness when standing still.
Understanding Primary orthostatic tremor
People describe "shaky legs." The tremor improves or goes away when walking, sitting or lying down, so people may sit or walk right after standing, out of fear of falling. They may also have tiredness, stiffness or weakness, and pain. It usually begins in adulthood. A clinical exam and a muscle test called surface EMG help with diagnosis.
Signs & symptoms
Symptoms vary from person to person. GARD lists these:
- Shaky legs and unsteadiness when standing
- Relief when walking, sitting or lying down
- Fear of falling
- Tiredness
- Muscle aches and spasms
- Muscle stiffness or weakness
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.
Care & treatment
- Care team
- Brain and nervous system specialists (neurologists)
- Expert care
- Ask about multidisciplinary care centers for rare conditions
- 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 rare disease patient organizations for support
- 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
GARD says the cause is not completely understood. The disorder is thought to involve a problem with how the brain regulates nerve signals that control muscle activity.
Also known as: pot; pot - primary orthostatic tremor
Patient organizations
Rare-disease groups that can help
- Global GenesRare Diseases · United States
- National Organization for Rare DisordersRare Diseases · United States
- Genetic AllianceRare Diseases · United States
- RARE FoundationRare Diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Primary orthostatic tremor.
Explore research for Primary orthostatic tremor
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- Eligibility is confirmed by the study team
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