I don't have time at the moment to type out my current situation but I very much would like to hear about other peoples experience of having something go wrong DURING remission.

By remission I mean that previous symptoms are largely gone and blood work looks normal.

I myself have had subglottic stenosis that required surgery happen while everything else is quiet. Has anyone else had this? Or some other problem?

Currently I am having severe neurological symptoms and my doctor does not believe it is Wegener's because my numbers are low. So he is not doing any treatment other than a large increase in prednisone. Staying on a large dose of prednisone is not a great solution if this is a Wegener's problem.

I have had this neurological problem before and it is devastating. It took me two years to be able to walk to my mail box again. Worst of all is that it causes incredible suffering that I cannot describe. I some times think that because I don't have words for it they think it doesn't exist. I'm sure that's not the case but it really starts to feel like that some times.