Sick daughter goes undiagnosed

Posted by ghennel @ghennel, Nov 19, 2019

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.

Contact the Mayo patient services office. I have read that other people have qualified for financial help so they could receive medical services there.

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Hi @ghennel,

I’m sorry to hear about your daughter’s health struggles – as a mother, I can imagine just how worrying it must be!
If you’d like to make an appointment at Mayo Clinic, please call one of our appointment offices – you can also request an appointment online. The contact information for all 3 Mayo Clinic locations (Minnesota, Arizona, Florida) can be found here:
http://mayocl.in/1mtmR63
The Clinic’s representatives will ask questions to help direct you to the best specialist, either at Mayo or closer to home.

Might I also suggest you use the following resources for insurance and billing questions? Or you can contact Patient Account Services for help – https://www.mayoclinic.org/patient-visitor-guide/billing-insurance/contact-us

– Billing & Insurance https://www.mayoclinic.org/patient-visitor-guide/billing-insurance
– Charitable Care and Financial Assistance https://www.mayoclinic.org/patient-visitor-guide/billing-insurance/financial-assistance

A lymphatic malformation is a clump of lymph vessels that form a growing, jumbled, spongy cluster, but they are benign (not cancerous). When the condition affects the lymph nodes in the membrane that connects the bowel to the abdominal wall (mesentery), it's called mesenteric lymphadenitis.
Lymphatic malformations in the gastrointestinal tract (gut) or pelvis can cause:
– Pain in the abdomen, often on the lower right side
– Abdominal tenderness
– Fever
– Nausea
– Vomiting
– Diarrhea or constipation
– bladder obstruction (trouble peeing)
– infections
– protein loss due to poor absorption and loss of lymph into the gut
https://www.mayoclinic.org/diseases-conditions/mesenteric-lymphadenitis/diagnosis-treatment/drc-20353803
The most common cause of mesenteric lymphadenitis is a viral infection, such as gastroenteritis, or it could be a bacterial infection, inflammatory bowel disease and lymphoma. I’d encourage you to read this Mayo Clinic article about
"The complexities of pediatric motility disorders” https://www.mayoclinic.org/medical-professionals/pediatrics/news/the-complexities-of-pediatric-motility-disorders/mac-20452819

Here is a related Connect conversation that you might find useful:
https://connect.mayoclinic.org/discussion/mesenteric-panniculitis-or-schlerosing-mesentertis-auto-immune-around-small-intestine/
I’m tagging @chensley638 @seaotter @subhi @snoopdog @gmeg @ritaz1964 @kimh @constancelee @gussypup333 @dinayo @mp333 @pcfromfm so that they can share their valuable insights – it always helps to know that you are not alone.

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I am going to have her contact patient services to see if she can qualify for financial help. The information you just gave me is more than we have received anywhere in the past 10 years. Her symptoms sound exactly like mesenteric-panniculitis. It would be amazing if she could be a patient and finally get a diagnosis. I stumbled upon these message boards doing some research for her. Thank you so much!

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