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I posted this thread 4 years ago. If you have a read you can see detailed symptoms etc - https://patient.info/forums/discuss/no-idea-what-i-have-had-for-4ish-years--259134
After reading the comments a few years ago and pressuring myself to get many tests done, I can finally tell everyone that I have a diagnosis! My previous Drs used to brush off my symptoms and label me with IBS but I knew there wasn't something quite right. In the process of finding out my diagnosis I have had appendicitis (So had it removed) and had my gallbladder removed.
I have Cyclic Vomiting Syndrome, Mitochondrial Disease and Gastroparesis and most likely have done my entire life as I have a track record from the age of 3 years old of going to the ER at least once a year from uncontrollable vomiting for up to days along with abdominal pain.
https://rarediseases.org/rare-diseases/cyclic-vomiting-syndrome/ - Cyclic Vomiting Syndrome
http://mitochondrialdisease.nhs.uk/patient-area/what-mitochondrial-disease/ - Mitochondrial Disease
https://rarediseases.org/rare-diseases/gastroparesis/ - Gastroparesis
I went over 9 years without being diagnosed and being in daily pain. This hasn't changed much, but with a diagnosis I can now finally manage some of my problems while trialing newer medications.
I just wanted to let everyone know that you should never stop looking for your diagnosis. Finding out what I have and now having support for it has changed my life. Even though there's no cure found for any of my diagnoses, I can manage a lot of the other symptoms that come and go and have a plan for when I inevitably end up in the ER 4-6 times a year. My local hospital is in direct contact with my Gastroenterologist and know exactly what I need when I get there, rather than them fussing around for hours not knowing what to do!
To find my diagnosis I have had:
Colonoscopies every 2 years (due to finding precancerous polyps in the colon at age 22)
Surgery to remove the gallbladder
2-3 Ultrasounds a year
7 CT scans
Gastric Emptying Exam
Going to the ER 4-6 times a year, every year for the same reason
Blood work 4 times a year
Experimental vagus nerve stimulation treatment to 10 patients across the globe
Other Gastro Tests to rule out other illnesses
I hope anyone else suffering out there is able to find help for it! No one deserves to go through what any of us here on the forums do! ❤️
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