I'm pretty new to this. I have a tentative (?) diagnosis of 'limited' Wegener's, it's mostly my lungs that have been affected, with a first 'flare' 2 years ago, and another (milder) one about 5 months ago. Both times I got multiple pulmonary nodules & breathlessness. First time round, I had fever / sweats / weight loss as well. Both times, it calmed down on its own, including resolution of the manky bits in the lungs.
I've had no treatment so far, just a barrage of tests over the last 2 years, like I'm every doctor's pet research project - they all find me very interesting, and I've amassed an impressive collection of 3D imagery of my internal organs, but no-one can tell me for sure what's wrong with me or how it will or will not affect my life. The constant hospital appointments / scans / tests / uncertainty are really messing with my sanity. But I guess I should be glad that for now, I don't need immunosuppression (my heart goes out to all of you who are suffering so much worse that I have so far, some of the questions / stories here make me realise I've been lucky).
The thing that initially made me go to my GP 2 years ago was the fact that I got six episodes of migraine aura (temporary visual disturbances) on six consecutive days (I was also feeling a bit breathless and was getting what I thought was back pain - but I found the visual disturbances much more, well, disturbing). Migraine auras run in my family, and I had previously got them once or twice myself, but *never* six days in a row!
Last October, when I got my second 'flare', the same thing happened - I knew something was wrong when the migraine auras hit. They did an MRI of my head & there's nothing wrong with it, but x-rays / CT scan found the unwelcome return of the lung nodules, leading to the tentative diagnosis of lmited WG.
So. All my symptoms are consistent with what I've read about 'limited' WG, except for those weird migraine auras, which to me were the most noticeable thing wrong (losing your power of vision for 30 minutes every day six days in a row - not something you miss easily).
The docs just shrug their shoulders & stroke their chins when I ask about how the auras fit in with my diagnosis. (Actually, they shrug their shoulders & stroke their chins a lot whenever I'm around).
Does anyone else get migraine auras with vasculitis flares?
(Gosh - is this the rambliest question in the history of ever?)