#hyper ige

So I had my appointment with the geneticist in October. It didn't go very well. She confirmed my fibro and pots but said I didn't have EDS. She very nonchalantly told me that I didn't qualify for the condition I was diagnosed with 9 years ago, the condition that was my only life line. So of course I had a melt down cus I had been in that room for 3 hours hoping for answers and I left will fewer then I had before. So they did the genetic testing which finally came back last week and it did not indicate any connective tissue disorders. I had three genetic variants, two with not enough changes, and one they suspect is the culprit. I have to have a serum test for elevated iGe but there fairly certain that it's hyper iGe syndrome which would explain my skeletal abnormalities, joint laxity, skin issues, immune issues, and basically every issue I have. It's still an untreatable genetic condition but I just need a name. I need something to blame. You really know a condition is rare when there is not a single hyper iGe post post under that tag.