#hyper ige

[delirium-mind]

For most people, getting medical tests results that say

"No abnormalities, everything is normal" is great

But when you constantly are in pain, can't eat can't lay down can't sleep or hardly do anything..its such a fuck you slap in the face. It's hard enough to get doctors to believe you in the first place to get any testing going on...then to get this result? It just feels like it ruins any and all chances you might have had and flushes them down the fucking drain.

Having a (invisible) chronic illness sucks but it's mostly because doctors don't seem to want to listen or believe you.

[grenadewithcurls]

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.

[raeesahislam]