Leigh
I have never heard of what you have, but I do have problems gaining weight; and I know what you are talking about w/ the bony shoulders. I have been told I have Epstein-barr virus. My dr. says there is nothing you can do. I've pretty much gave up on gaing weight. What is that you have and what are your symptoms? Have you tried any weight gaing suppilments that you add to milk/ They help if you can drink milk. e-mail me back.