Tom, true about the lungs presenting as pneumonia; luckily for me it was only a couple of months before I got the CT scan that showed "cavitary lesions" and even though they sent me home with antibiotics, the doc there at the hospital was pretty sure I had WG. They just left it up to my regular docs to determine that, since I wasn't in bad enough shape to keep me there, and was pushing to go home. So, no, I don't have COPD or need to use oxygen, but I know there are some on here who do, besides you. My lungs are OK and have taken a back seat to sinus destruction. It does seem a little weird that they don't think you have sinus involvement even though you feel you've had all kinds of those issues in the last 8 years! I also can't smell, but I can taste, though not as well as before. And I can breathe well through my nose, and could even before the septum was destroyed, unless it was temporarily plugged, which could be relieved with a saline rinse. In any case, if you do have sinus involvement, it seems likely you will avoid saddle nose since you are under treatment and they haven't seen anything like a perforated septum in there. Everyone is different!
I hope the same for scottgirl. I hope she gets with a more experienced doc who will not tell her that symptoms only in the sinuses cannot be Wegs. We here know differently. Many of us on here, including me, have started with sinus issues that docs ignored or treated as everyday sinus issues and later turned out to be Wegs. I hope that our discussion of our own cases here will offer her some insights.
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