Sick daughter goes undiagnosed
My 26 year old daughter started having some digestive problems as a teen along with abdominal pain that came and went unexpectedly. They found 2 lymphatic formations in her small intestines which they removed, but were not sure if that was the cause of her pain and digestive problems. The sharp pains she was experiencing did go away, but nothing else. No one had an answer as to how or why she had these growths. Birth defect was the best guess there, but why didn't it bother her until she was a teen? As time went on after this surgery she had constant problems with digestion, bloating, constipation/diarrhea, inflammation, vomiting and night sweats. Since her teen years she has had 4 CAT scans, 1 MRI, ultrasounds, loads of blood work and more specialist and ER visits than I can count. She can't keep weight on and weighs 89 lbs right now, can barely hold a part time job due to pain, nausea and exhaustion and it is affecting her mental state. She has been to many, many specialists over they years and they seem to run the same few basic tests. They know something is off, but no one goes the extra mile to figure out where this is all coming from. You can feel a hard "mass" for lack of a better word, in her abdomen. Nothing shows up on the scans so no one bothers to check further. One guess is scar tissue, but from what and why and do you just leave it? They found that she is producing very small amounts of progesterone, so her hormones are way off as well. No idea if the two issues are somehow related….and different specialists don't seem to talk to each other. She also gets inflammation on one side of her where her rib cage is so inflamed it distinctly sticks out further than the other side and is tender to the touch. No one has an answer as to why that happens from time to time either. Every time she has gone in for tests or the ER, they don't find anything specific, however they all think something is going on and tell her to go to a specialist. So she gets prescribed anti nausea and pain meds. She refuses to rely on pain meds so doesn't fill them, and the anti nausea only does so much. Pain meds also cause her GI upset. She doesn't want meds to cover the symptoms, she wants to know what is causing all of this. Her insurance limits her ability to get quality care and a decent diagnosis. I really wish she could be examined at Mayo, because I feel this is the only place that would go the extra mile to actually diagnose what is causing all these problems. She is on a very limited budget so her options are very slim. She is 26 and is deteriorating. She thinks that she is just doomed to spend the rest of her life this way and that she will never find answers or help. Even if she has a health issue that will need constant care, it is hard to take care of a problem when you don't really know what it is. Pain meds and anti nausea are not health care.