There is no specific test or tool to diagnose lymphoedema. 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 lymphoedema – primary and secondary lymphoedema.
Primary lymphoedema is a rare condition 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 lymphoedema often occur in early life, symptoms may also occur after years and it may not be the first diagnosis that healthcare professionals (HCP) think about. Secondary lymphoedema is caused by injuries or other underlying medical conditions and is thought to be more common than primary lymphoedema.
Who makes the diagnosis of lymphoedema?
Your general practitioner (GP) or a nurse is likely to be your first contact person when you notice any signs or symptoms of lymphoedema. The first step is to rule out any other reasons for your swelling.
Your healthcare professional should provide you with a general check-up that includes a complete examination of your body, including your skin and soft tissues, lymph nodes, the function of your arteries and veins and take note of any swollen areas. In addition, blood samples provide information about the function of your heart, kidneys, your thyroid glands and blood count.
This examination along with your medical history are important in determining if you may have primary or secondary lymphoedema.
After that, your HCP should refer you to a specialist for lymphoedema to confirm the diagnosis and to develop a holistic treatment plan with you.
How is lymphoedema diagnosed?
Your past medical history and a holistic examination are the two main elements when diagnosing lymphoedema.
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
- Test your blood vessels (veins and arteries) to check your blood circulation
Your past medical history and the examination of your affected area are often enough to support the diagnosis of lymphoedema. Your HCP may need further information, for example if you have other medical conditions that can cause a swelling. 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 visualises your lymphatic system under X-ray
- Lymphoscintigraphy - uses a nuclear medicine that visualises 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 lymphoedema is important to support your treatment and to prevent progression of your lymphoedema. Contact your HCP if you notice any changes or are experiencing any new signs and symptoms.
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