Hello, I’m Kim and I’m fairly new to the zebra club. I’m still in the process of getting genetic testing and some other images/tests completed and waiting for some appointments w/ other specialists after 2-3 years of getting nowhere with regular doctors. So there’s no full diagnosis yet but the geneticist has a working diagnosis based on my symptoms & said it sounds like some sort of EDS or HSD, & dysautonomia w/ some POTS symptoms. I also very recently started having some newer symptoms that could be histamine/MCAS related but I’m unsure and waiting to see a different doctor for that. Mostly just new episodes of suddenly itchy skin, accompanied by other symptoms that I have been getting for a longer but attributed to EDS such as migraines and GI issues. Currently trying to adhere to a low histamine diet and identify triggers until I know for sure what’s going on to be safe. My health has been steadily declining & I’m overwhelmed. I seem to cycle through different symptoms and there’s always some level of pain involved, but I was wondering, does anyone else get lower right abdominal/pelvic pain that seems like it could be appendicitis but isn’t? I’ve had a few scares w/ this and I go to the hospital and they do a CT scan and say my appendix & other organs look fine. It’s been happening more frequently lately, and seems to make my lower back pain worse. I get pain all around my abdomen too, but it’s most frequent/prominent on the lower right side. I also have endometriosis & a history of pelvic surgeries, but this doesn’t feel like that unless maybe it’s surgical adhesions? I was wondering if perhaps it’s interstitial cystitis because I have a few other symptoms for that such as frequency/urgency to urinate since I was a teen, but I have no clue. Last night it was bad & I also almost passed out so went to the hospital again & they weren’t much help, still battling symptoms today. No worries if nobody can relate, but I wanted to see if anyone has experienced anything similar. Thank you!

Posted by kimprescott493 at 2022-09-12 22:06:22 UTC