My PCP referred me to another vascular specialist. I went to see one years ago but I don't think they considered venous insufficiency or varicose veins at the time because I was 19 and it's not common at that age. The new doctor did ultrasounds of my veins and valves in both legs and said the blood is flowing backwards in the superficial veins which is likely causing my edema. He said I have varicose veins and that endovenous laser ablation should solve my problems. They numb your legs and insert a catheter into the bad vein and use a laser to close the vein. It sounds strange but they said it's an easy outpatient procedure with very little recovery time.
I always thought that varicose veins were visible and bulged out, but mine don't. I'm planning to have the vein procedure done next month and hope it will eliminate the edema. If you haven't been to a vein specialist before, it may be something to look into.
I am glad you are able to get help with this, and thanks for sharing. Our problem with this disorder, is that it is systemic and involves the whole body. This is great for treating those symptoms, but it won't help with gastroparesis or the numerous other problems this disorder causes. Keep us posted on your progress and any other benefits that occur with this as we are all still learning. If it does alleviate these things, we all would love to know. Helping one another is so important. The edema is not limited to the legs, and you can have this disorder without edema. Thanks again for your input.