Living with Isolated asymptomatic elevation of creatine phosphokinase
A condition in which a muscle enzyme called CK stays high in the blood without any signs of muscle disease.
Understanding Isolated asymptomatic elevation of creatine phosphokinase
CK (creatine phosphokinase) stays high in the blood, but tests show no sign of nerve or muscle disease. It is usually found by chance, after other causes of high CK are ruled out. It can be found at any time in life.
Signs & symptoms
GARD doesn't list specific symptoms for this condition yet.
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 genetic specialists.
- 3Consider genetic testing
Changes in CAV3 are linked to this condition. Genetic testing and counseling can help confirm a diagnosis and explain what it means for your family.
Care & treatment
- Care team
- Genetic specialists (geneticists)
- 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
Changes in the CAV3 gene are listed. It is passed down in an autosomal dominant way, meaning one changed copy of the gene is enough.
Also known as: hyperckmia; idiopathic asymptomatic hyperckemia; isolated asymptomatic hyperckemia; isolated hyperckemia
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 Isolated asymptomatic elevation of creatine phosphokinase.
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