Is anyone here firmly diagnosed with Wegener’s granulomatosis ? Im having an ANCA panel done along with my other regular labs for antiphospholipid antibodies and what ever else they test while on cellcept. . The ANCA test is used to determine autoimmune vasculits and is associated withWegener’s granulomatosis . I already have interstitial lung disease and mutiple areas of chronic mucosal inflammation with the newest area being my left sinuse. I had to see the ENT last Monday because following a random severe nose bleed a couple months ago i was having a constant onesided headache with pain and pressure in the upper left side of my nose, feels like I've be punched:/ i had a brain MRI and it showed a lot of fluid and inflammation in my air cell on the left side of my skull so that would definitely causes a sharp headace. The ENT put a camera up my left sinuse and only to the top of my throat and that's when he identified the nasal inflammation. So now with my sinuse and nasal cavity bebeing affected ( never had any sinuse problems ) it's very concerning be i already have a firm relapsing polycondritus diagnosis and in both diseases the bridge of the nose will collapse over time if the inflammation can't be controlled. So far I've only had very little improvement with some of my symptoms on the strongest treatments. So if anyone has any experience with Wegener’s granulomatosis it would be greatly appreciated :)
Did you find a forum for this, dawncelest? Have you tried this one? http://www.wegeners-granulomatosis.com/forum/