Hi Everyone!
I wanted to reach out here for possible advice and to share my story. Although I (as of now) do not have enough symptoms to be regarded as having wegener's, I do have some symptoms unique to GPA that are alarming to doctors. However, I see that many people struggle with a diagnosis and also my dad is actually an ENT and he has sent me to doctors he knows personally- I feel that they may be telling him what he wants to hear to some degree and that maybe I should be watching out more carefully for changes since it is so important to catch this early. (they all seem to think "hmm.. maybe wegeners.. but no. doesn't seem like it".. yet they give no alternative and clearly there is no alternative online..)

A little about me, I am 24 years old and I have had severe nasal crusting and rhinitis for a very long time, at least 8 years. I would get very large dry and mucus filled discharge from my nose that was green and brown and had large streaks of blood. Now that I treat it with the rinsing, however, I am finding that I have what I would describe more as "flakes" that can be really thin or more thick and have smaller streaks of blood on them. Has anyone had this experience?

In addition to nasal issues, throughout this time and even before I always had some respiratory issues, I was constantly being diagnosed with bronchitis. Eventually my breathing issues got worse and I was diagnosed with Asthma- but this never really seemed to perfectly describe my situation. As it turns out, I have a tiny bit of subglottic stenosis which is pretty mild but still had the doctors were worried I may have GPA because of this combination. However my blood tests came back fine last august. In the past year or two my breathing has gotten a lot worse ( I moved to New york from california and the winters are much more harsh here). For instance throughout this past winter almost every night I have had a hard time breathing for a few hours, and have wheezing etc. In addition to constant nasal crusting which I am using neilmed to treat but still comes back within a day.

The reason I am posting here is because I wanted to see if anyone else had some pretty mild and limited symptoms for many years before being diagnosed with GPA. I also was wondering if anyone has tips or advice since no one else has these symptoms (except for those with atrophic rhinitis- but I know mine is not this because there is no foul smell). For instance with nasal crusting has anyone found that drinking a lot of water helps? Also , is it typical that nasal and respiratory issues get worse in the winter or is it perhaps the case that my symptoms are just getting worse now? And would anyone recommend that I get a urine kit and just check up myself to ensure no kidney involvement, or would you keep going to the doctors and try to find a GPA specialist? Any help would be greatly appreciated. I realize that my situation is mild for now and I am grateful. I hope it is alright I am posting here when I am not diagnosed with GPA, but this community just seems so supportive and is the only one in which people have similar symptoms to me. I really want to know what to look out for so that I can be prepared too, So any advice would be greatly appreciated. Thank you so much! I am sorry this post is so long , thank you for reading.