There is no specific test or tool to diagnose lymphedema. This makes the diagnosis difficult and a lot of patients struggle without a correct diagnosis for a long time. There are two main types of lymphedema – primary and secondary lymphedema.
Primary lymphedema is a rare disease that occurs when the lymphatic system has not developed adequately (or is not functioning as it should) from birth due to a genetic reason. Although the symptoms of primary lymphedema often occur in early life, symptoms may also occur after years and it may not be the first diagnosis that healthcare professionals (HCPs) think about. Secondary lymphedema is caused by injuries or diseases and is more common than primary lymphedema.
Who makes the diagnosis of lymphedema?
Your general practitioner (GP) or a nurse is likely to be your first contact person when you notice any signs or symptoms of lymphedema. The first step is to rule out any other reasons for your swelling.
Your Health Care Professional (HCP) will do a general check-up that includes a complete exam of your body, including your skin and soft tissues, lymph nodes, the function of your arteries and veins and any swollen areas. In addition, blood samples provide information about the function of your heart, kidneys, your thyroid glands and blood count.
A complete physical exam and your medical history are important in determining the type of your lymphedema.
After that, your HCP should refer you to a specialist for lymphedema to confirm the diagnosis and to develop a holistic treatment plan with you.
How is lymphedema diagnosed?
Your medical history and the physical exam of your body are the main elements in the diagnosis of lymphedema.
Here are some typical questions that your HCP will ask you:
- When did you first notice any signs or symptoms?
- Do your swellings improve overnight?
- Did you have any infections in the affected area?
- Do you take any medications at the moment and if so, what kind of medication do you take?
- Is there someone in your family with the same signs and symptoms?
Your HCP will examine your affected limb as well. This usually includes the following steps:
- Check-up of your skin to rule out any injuries or infections
- Palpation of your tissue (is it hard or soft?) and lymph nodes (are they larger than usual or painful?)
- Check your body for other swollen areas
- Measurement of the affected area to monitor the size over time
- Measurements of your blood vessels (veins and arteries) to check your blood circulation
Your medical history and the examination of your affected limb are often enough for the diagnosis of lymphedema. Your HCP may need further information, for example when you have other diseases that can cause swelling or in the very early stages of lymphedema. Several diagnostic tools can be useful in such a case:
- Ultrasound scan – uses high-frequency waves that create a picture of your tissue from the outside
- Lymphography – uses a radiocontrast agent that visualizes your lymphatic system under X-ray
- Lymphoscintigraphy - uses a nuclear medicine that visualizes the lymph drainage and your lymph nodes
- MRI (Magnetic Resonance Imaging) scans – uses a magnetic field to create pictures from the inside of your body
- CT (Computed Tomography) scans – uses X-ray to create a detailed picture across your body.
An early diagnosis of lymphedema is important for effective treatment and to prevent progression of your lymphedema. Be aware of your body and stay in contact with your HCP when you notice any changes or new signs and symptoms.
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