The ENT who believes I have Wegener's said he can diagnose it based on symptoms... I'm ANCA-negative and haven't had any biopsies. He's basing it on subglottic stenosis and obvious inflammation in my nose and throat, and pain and fatigue, I think. (My other docs don't necessarily agree though). It sounds as though you need a second opinion. From what I understand, the SED rate and CRP are pretty non-specific inflammatory markers.. They tell you when you have autoimmune inflammation, but don't narrow it down to which disease. I've had these elevated with polymiositis, then RA. Now they're not elevated although I feel like Wegener's (or similar symptoms if it's not wegener's) is not under control. It seems that this disease is unique in every person, and also overlaps or coexists with other autoimmune inflammatory diseases, so the diagnosis takes someone who looks at all of the signs and symptoms and blood tests and whatever other info they can get, and assesses the person and makes the call based on the whole bigger picture. For sure no one factor should cause them to rule it out, if all other aspects point to the disease. That's too dangerous.
Just when the caterpillar thought the world was over, she became a butterfly.
- English proverb.
Bookmarks