New member with long history

[htese44]

Hi everyone. I’m a 29 year old female and actually am not quite a new member, I posted years ago about symptoms such as nasal crusting , mild subglottic stenosis and “asthma” but negative labs.
I’ve had these symptoms for 15 years now, but ever since the start of the pandemic I got Covid and started to get some recurrent lung infections. I’ve had X-ray’s and CT scans and nothing has come back particularly concerning except that I keep getting pneumonia in the same part of my lung. I was in the ER this weekend for pneumonia and luckily , all other organs are fine- it just seems to be respiratory related. I’m going in for a bronchoscopy tomorrow. And Today I received an alert and saw that my MPO (p-anca) was 1.1 (it says normal is .9). I haven’t talked to a doctor yet but I think this is, I guess you could say, “finally” going to be what gives me the diagnosis.
I know I should be happy in some ways as I always sort of knew and maybe I can get better, but I am feeling really hopeless and scared. I just wanted to join this community and maybe get some hope for the future here.

[Pete]

I’ll give you the news the doc who diagnosed me gave. The bad news: You have GPA (whatever the hell that is) and it’s not curable. The good news: It’s treatable, and since we diagnosed you early on (a month after first symptoms appeared), you should recover pretty well.

I hope you can get a definitive diagnosis and get effective treatment. Good luck!

[andrew]

Hi everyone. I’m a 29 year old female and actually am not quite a new member, I posted years ago about symptoms such as nasal crusting , mild subglottic stenosis and “asthma” but negative labs.
I’ve had these symptoms for 15 years now, but ever since the start of the pandemic I got Covid and started to get some recurrent lung infections. I’ve had X-ray’s and CT scans and nothing has come back particularly concerning except that I keep getting pneumonia in the same part of my lung. I was in the ER this weekend for pneumonia and luckily , all other organs are fine- it just seems to be respiratory related. I’m going in for a bronchoscopy tomorrow. And Today I received an alert and saw that my MPO (p-anca) was 1.1 (it says normal is .9). I haven’t talked to a doctor yet but I think this is, I guess you could say, “finally” going to be what gives me the diagnosis.
I know I should be happy in some ways as I always sort of knew and maybe I can get better, but I am feeling really hopeless and scared. I just wanted to join this community and maybe get some hope for the future here.

Hope the broncoscopy went smoothly. Any movement on a diagnosis?

[htese44]

Hope the broncoscopy went smoothly. Any movement on a diagnosis?


The bronchoscopy went well, and they discovered that the subglottic stenosis is gone but that I do have some narrowing in my left main bronchus. Even with that, the pulmonologist didn't believe such low levels of MPO antibody was indicative of this disease. People want to believe that is congenital. But I know that there is really nothing else on earth it could be, especially with nasal crustingg (albeit not nearly as serious as people I see online) and the positive lab. I am finally seeing a rheumatologist next Tuesday. I hope they will want to be proactive and at least put me on some low dose of something to prevent progression and manage my current symptoms. Or at the very least, check me very frequently for progression...

[andrew]

Good to see it went well AND you get a Rheumy. Good stuff. It's a long road but hopefully you're almost there now. Let us know how the appointment goes!