Most MD’s base a secondary lymphedema diagnosis solely on your medical history and the onset of symptoms. If you had lymph nodes removed in the past and your swelling occurs in the vicinity of lymph node removal you are likely to be diagnosed with lymphedema. Very often the initial onset occurs in conjunction with other factors e.g. long distance airplane travel, an insect bite in the affected limb or inflammation of the skin (cellulite).
The diagnosis of primary lymphedema is usually more tricky and requires extensive testing. Basically it is based on the absence of other diseases. Patients will undergo a multitude of tests to rule out other diseases. Most often this includes extensive vascular testing and screening for cancer. You should be aware that many doctors and therapists have never heard of primary lymphedema.
What does Lymphedema feel like?
Initially Lymphedema is most often experienced as a feeling of swelling or tightness of one limb. This does not always mean that the patient has a visible increase in the size of a limb. At times patients notice that clothing fits tighter around one limb or that jewelry leaves deep imprints. Those symptoms are significant for the beginning stage of lymphedema. Some patients complain about a variety of discomforts including sensation of pins and needles, tightness or tenderness in the elbow or behind the knee, leaking of lymph fluid from the skin and/or heaviness of the affected limb.
If left untreated those symptoms will progressively become worse and subsequently lead to a visible increase in swelling, as well as changes of the skin. Those changes typically manifest as roughness, dryness and hardening of the skin. In the later stages of lymphedema the affected limb may become grossly enlarged and distorted in contour with exaggerated skin creases, folds and lobules. The late stages of lymphedema can ABSOLUTELY be avoided by treatment and care from a lymphedema specialist!
Is there a cure for Lymphedema?
At this point in time there is no cure for lymphedema. With early intervention it can be successfully managed. Diagnosis may require an evaluation by a physician with expertise in lymphedema. Lymphedema therapists are a great resource to find those MD’s.
National Lymphedema Network:
Lymphedema Awareness Foundation:
Y-ME National Breast Cancer Organization: