Follow up 4 years later! Cyclic Vomiting Syndrome, Mitochondrial Disease and Gastroparesis

Posted , 2 users are following.

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)

Multiple Endoscopies

Surgery to remove the gallbladder

2-3 Ultrasounds a year

4 MRI's

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

Allergy Tests

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! ❤️

2 likes, 2 replies

Report

2 Replies

Report as inappropriate

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.