Well this was myself and my parents initial thoughts when the results of the pilcam came back through the post. I wasn't given a consultation so had no doctor to speak to about the results, but looking at the ulcers and lymphangiectasia we assumed this was important. However, after complaining to get further investigation, a letter was sent stating that it's a common finding and wouldn't be causing my symptoms and needed no further investigation.
What I don't understand also is that when I had a barium meal and an ultrasound, which was probably 2 years prior to the pilcam, the lymphangiectasia didn't show up on those?
As far as support, I still live with my parents and they support and care for me. It's literally tearing my whole family apart seeing me so ill, but we're getting no further towards getting a diagnosis. Also, yes, I have been turned down for disability benefits multiple times over the years, as I don't have a diagnosis.