Sick daughter goes undiagnosed

@ghennel Good morning and welcome to MayoClinicConnect. I can just imagine how worried you are about your daughter and what she’s going through. I’m glad that you found this site. I’m going to tag @ethanmcconkey to see if he will move this discussion to a site where it will be seen by more people. You will get some emails and you can just click on the reply button.

Hi @ghennel I'd like to join @becsbuddy in welcoming you to Connect. That must be so gut-wrenching to see your daughter struggle so much and find no answers.

Here is a link to another discussion that you may find helpful within the Autoimmune Diseases (https://connect.mayoclinic.org/group/autoimmune-diseases/) group: https://connect.mayoclinic.org/discussion/undiagnosed-and-dont-know-where-to-go-next/

In addition here is a discussion in the Chronic Pain group (https://connect.mayoclinic.org/group/pain/) that may be helpful as well: https://connect.mayoclinic.org/discussion/has-anyone-been-diagnosed-with-abdominal-wall-pain/

Lastly, I thought that @contentandwell and @yrose have experience with searching for a diagnosis and may be able to offer their support.

Back to you @ghennel, has your daughter been given any diet guidance to try and help with symptoms? Additionally, how are you handling all of this? Are you finding the support you need while you try to help her?

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.

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.

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.

Ethan,
Thank you for the additional groups. I will definitely try posting there.

My daughter, Shannon, has been given some diet guidance and it has helped a bit. She is unable to put weight on and keep it on. She has had 4 CAT scans, an MRI, endoscopy, ultrasounds,loads of blood work and more ER visits than I can count over the years. When they can't pinpoint anything specific they prescribe an anti nausea and pain medications and send her on her way. She opts not to go down the path of pain medication reliance and the pain meds end up causing digestive upset anyways. They know something is off, but no one has dug far enough to figure out where this is all coming from. This started in her teens.

As far as I go, I worry about her every day and am constantly on the search for answers. It makes no sense to me how so many doctors know something is wrong, but no one goes the extra mile to figure it out. It has to be something outside the normal list of disorders. Part of the problem is insurance as well and the limit of quality care she can actually seek out. She is barely holding a part time job because she is exhausted and tells me that she thinks she is just going to feel like garbage her entire life. She is starting to give up hope she will ever be helped. She is 26, I can't accept that for her. So am I okay? No, not really. I am sad that I as her mother, can't fix this for her or at the very least get some answers so she can manage her health problems. It is hard to manage an illness when you don't know what it is.

Thank you for your time,
Ghennel