Originally Posted by
annekat
Oh, no problem about the confusion about whatever. I know there are people with sinus issues who haven't gotten saddle nose, and may not, likely because they were diagnosed and treated early enough to stop or slow down disease activity before the nose got to that point. Yeah, in the past, I got to leave my glasses on for the license pics. Your photographer friend did a good job! Thanks for sharing that. Mine is not so bad from certain angles, and terrible from others. The glasses really help.
Well, I was diagnosed in 2011 at age 58. I had had 2.5 years of WG symptoms, and no one put two and two together since these were issues common in the general population. It started with a big antibiotic-resistant ear infection in both ears, which I'd never had, so should have been a clue, and I've heard of the same initial event from others on the forum. Then there were months of recurring sinus infections and voice problems, all chalked up to allergies, which made sense, because I'd had them before during my life, mainly during pollen season, though my main symptom had been asthma and not sinus stuff. I was tested and found allergic to lots of pollens, molds, and household stuff such as pet dander and dust, and took allergy shots for over a year. They seemed to help. Then in winter or 2011 I developed lung issues and thought I had pneumonia. The doc wasn't sure so I went into the hospital overnight for some tests, and by that time I was feeling really lousy all over, red eyes, headaches, tightness and hard veins in my face... but they were focusing on my lungs and I got a CT scan there. The doc there suggested I could have WG based on the results showing numerous cavitary lesions. I was to pursue that with my regular docs, so I went home with some prescriptions for pred and antibiotics and I think the very next day noticed my saddle nose! It seemed to have appeared overnight, although it could have been there longer. I had started reading the forum and researching WG online, so knew what it was. I got in with my ENT right away, the same one who had missed the possibility of WG for 2.5 years, and got a nasal biopsy which came up positive. He was very apologetic and still is. I figure if he'd caught it a lot earlier, I might not have gotten the saddle nose. Oh, well, can't do much about it now.... I also feel close to remission but that if I got off the drugs I'd probably flare, and I do seem to have a little flare every winter, right around when certain trees start to pollinate, coincidentally.
Would be nice to hear a little of your story, too, how your WG progressed and at what point your saddle nose appeared... was it gradually or all at once and did you notice any pain, etc., as it was occurring? In my case I did not.
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