Living with Acute flaccid myelitis
A condition of the spinal cord that causes sudden muscle weakness and loss of reflexes, often after a viral illness.
Understanding Acute flaccid myelitis
Most people who develop AFM had a viral illness with flu-like symptoms one to four weeks before. Many people continue to have muscle weakness for months to years. Sometimes the muscles used for breathing weaken, and a ventilator is needed to help with breathing.
Signs & symptoms
Symptoms vary from person to person. GARD's summary says they include:
- Sudden weakness in an arm or leg
- Loss of muscle tone
- Weak or missing reflexes
- Pain
- Weakness in the face
- Trouble swallowing, speaking, or moving the eyes
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
Siegel Rare Neuroimmune Association may keep lists of experts for this condition.
Care & treatment
- Care team
- Brain and nervous system specialists (neurologists)
- Expert care
- Expert lists: Siegel Rare Neuroimmune Association
- 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 Siegel Rare Neuroimmune Association
- 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 it is not clear why some people develop AFM and others do not. Most people had a viral illness with flu-like symptoms first.
Also known as: afm
Patient organizations
- Siegel Rare Neuroimmune AssociationAcute flaccid myelitis · United States
You are more than your diagnosis
Perspectives from people navigating life with Acute flaccid myelitis.
Explore research for Acute flaccid myelitis
Explore actively recruiting Acute flaccid myelitis studies with HealthSpark.
Find actively recruiting studies for Acute flaccid myelitis with HealthSpark. Share your city to explore research near you.
- Recruiting studies from ClinicalTrials.gov
- Share your city to look for research near you
- Eligibility is confirmed by the study team
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Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
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