A mystery that is going to eat me alive

I had a ganglionueroma tumor removed off my descending aorta about 7 months ago and according to docs, all went just as planned. However, since the surgery I have found myself to have some weird kind of eating disorder. Immediately following the surgery I was unable to eat more than 2 bites of anything but the docs didn't seem to find this odd as I was released from the hospital without so much of a word about it. Within 3 weeks I was admitted back to the hospital for dehydration/malnutrition for 4 days, all blood tests came back normal and when they performed a CT scan, that came back normal as well. Following that, I went to see my PCP who referred me to a gastroenterologist. He performed a colonoscopy and endoscopy on me, finding a granuloma present in my colon but never bothering to mention this to me. He then performed a 90 minute gastric emptying study on me along with a barrium swallow and both came back fully normal. During this time I am suffering from severe nausea, vomiting, diarrhea and an inability to eat more than once or twice a day only taking in maybe 700-1000 calories per day. Since my surgery I have lost over 60lbs, weighing in at just over 103lbs right now. After running so many different tests on me, the gastroenterologist referred me to the Mayo Clinic in Scottsdale, AZ for further study. I have now been seeing a physician there for 2 months having another endoscopy done with numerous blood tests and a 4 hour emptying study, nothing out of the ordinary there either. I have come no closer to finding a cause for my weigh loss or nausea than I was back in January. My weight seems to have plateaued for now, but for how long I do not know. Everyday I continue to suffer from nausea and vomiting, I am on 3 separate medications for the diarrhea which has helped as this doc seems to be treating me for Crohns Disease but he has not diagnosed me with this, the medicine only helps deter the diarrhea, nothing else. I find that if Im up too early in the morning or don't get a full 8-10 hours of sleep I am very ill that day with an inability to eat much or do much activity at all. I have been on disability for 5 months now as this has affecting being able to arrive to work in the mornings. Also I have moderate to severe pain in my right shoulder with numbness and tingling all down thru my right arm and hands to my fingers. I am desperate for answers as my life seems to be hanging in the balance. I am able to eat bean burritos on a daily basis, one of the few things that I don't tend to throw up. Another odd sympton is after I eat, I get the feeling of extreme fatigue and weakness and have a hard time doing any activity at all, including walking. I have a lot of headaches but the more sugars I put in my body the worse the headaches get. Please if you have heard of any rare diseases or disorders or anything to give me an idea of what is going on that I can mention to my doctor it would be much appreciated. I am afraid within the next 6 months I will be eating intraveneously, I am 26 years old....this is not how I imagined spending my days. My life has already been so negatively affected by whatever this is as I can not hardly have a social life due to my lack of energy or ability to eat and the onset of nausea at unpredictable times. But the worst is my 2 year old daughter is losing her mother and no one can figure out why. Please help?!!!!!