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I want to thank you so much for posting this and sharing the details. It seems like we have similar stories. My daughter was been diagnosed with EDS about 4 months ago. We just had an appointment with a cardiologist last week and suggested Mayo in FL. She's been suffering with the severe digestive issues since March of this year She's had numerous scans and tests with a diagnosis of rumination syndrome. However since that diagnosis all of her symptoms have worsened. The stomach issues are more severe, there's pain with eating, constant vomiting, headaches, nausea, joint pain and the list goes on. Throughout our constant reaserch, we've discovered there is no pain with rumination, but the Dr. is insistent on going with the original diagnosis… SMH Seems to me like the doctors have ran out of pages in their books and don't know what else to do to help her. They've prescribe multiple meds, However none of them have helped with any of her symptoms of constant vomiting, nasuea and headaches etc. They're looking to treat the symptoms and not the cause. It's very frustrating to see her go through this for this long with no plan to get this issue under control. I plan to reach out to the doctors at Mayo and hopefully they will be able to help. Thank you again for sharing your story.

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Replies to "I want to thank you so much for posting this and sharing the details. It seems..."

@needrelief Welcome to Mayo Clinic Connect, a place to give and get support. You are looking for answers and treatment for your daughter's debilitating symptoms.

Below I have linked the Digestive Health group along with a discussion in that group related to rumination syndrome. You may wish to scroll through the past discussion and look for previous suggestions and connect with any members that are still active.

– Digestive Health https://connect.mayoclinic.org/group/digestive-gastrointestinal-problems/
– Would like to talk to other people with rumination syndrome ://connect.mayoclinic.org/discussion/would-like-to-talk-to-other-people-with-rumination-syndrome/

May I ask what other diagnoses you are considering so I can connect you with those groups, discussions, and members?