I am a sufferer of a complex case of oedema to areas of the face neck and arms, organs, and (later) the legs. There is question of primary disease, but no formal diagnosis has been made due to poor investigation- possibly microscopic lymphatic malformations of lymphangiomatosis could be causal to the facial edema? I remain undiagnosed for 10 years and am currently 38yr old female.
During this time, I have suffered breakdown of the outer skin layers over the facial area and behind the ears, caused by thickened/damaged lymph vessels and connective tissue (identified by radiology) located in close proximity to and pressuring the epidermal layers. The vessels are hardened and thick, and constantly cause breakage to the skin alongside fibrotic tissue.
I have been told by specialists (dermatology) these symptoms simply "don't happen"). I have experienced otherwise and would like to know if other patients of lymphatic disease or edema have suffered similar symptoms?
Also, how could such a symptom be explained if noted as a symptom to either oedema or lympheodma?