7 ms·
Going through something very similar. Started 6 years ago when my lips became inflamed out of nowhere. Lasted a confusing week and then was gone like it was nev
by nostromon 10y ago
Going through something very similar. Started 6 years ago when my lips became inflamed out of nowhere. Lasted a confusing week and then was gone like it was never there. About a year later, it came back again a little bit worse and with some discharge. This pattern continued, sometimes only a few months between outbreaks, and sometimes over a year. New symptoms started coming with each outbreak. At this point I can feel it coming on and manage it with a steroid cream, but now my ears, eyes, nose, and other parts of my body have similar symptoms. The worst part is that it's incredibly painful, to the point where I have to leave work, but really doesn't look that bad, so it's hard for other people to understand what's happening.
I've been to 5 different doctors, a general internist, 2 dermatologists, an ENT, a gastroenterologist, and have gotten 5 different diagnosis. It feels pretty lonely, but I'm glad to see your story here, and that this article is shining more light on these kind of ailments.
- uberduber 10y agoI have an autoimmune disease and way too many friends with them as well, so I'm very familiar with the seeing countless doctors. Most people ended up getting a proper diagnosis at either a rheumatologist or neurologist.
- modulusprime 10y agoYou and everyone else in this thread should know that "immunologist" is an existing specialty. Find one. Make sure it's not just an allergist, but an academic type with multi-system hospital privileges.
- daegloe 10y ago+1 for the Immunologist recommendation. That's where everything finally came together for me.
- uberduber 10y agoAny tips on finding one? I'm assuming you don't mean infectious disease specialist. I'm familiar with most of the allergists in my area and none are immunologists.I just did a search on google and I can't seem to find any in SoCal. Are they clustered somewhere in the country? Like how all the geneticists seem to be on the east coast, and the limited geneticists here all seem to be in children's hospitals.