LilyPony
02-03-2011, 10:11 AM
Hello all... Been quite a while since I've been on here because what I thought may have been progression of my limited wegs was attributed to severe acid reflex getting in my windpipe and causing severe cough-variant asthma. This diagnosis was well supported by acid monitoring and near immediate cessation of symptoms with Advair and a strong reflux med.
I got myself established with rheum who felt there was nothing to suggest anything other than the acid reflux. My limited wegs seemed well under control and didn't seem to be anywhere other than the area behind one of my eyes and tear gland.
Fast forward to early Dec. I've been having sinus pain above that eye and nosebleeds on that side. I went to the rheum and had bloodwork done and was given antibiotics in case it was just a stubborn sinus infection. I got a call a few days later that my weg's "test" (ANCA I assume) was "essentially" negative, so it was unlikely that I had wegs at all.
This got me very upset because it was diagnosed from biopsies and we all know that there is no blood test that can prove or disprove with complete certainty. I don't know if the nurse thought I was stupid and tried to simplify the message, or if this is what the doctor truly wanted to relay to me.
Currently, I am having the sinus pain which has spread to my nose, on/off ear pain, and minor nosebleeds a few times a day... all on the weg's eye side. I've had what I assume is the nasal crusting on the bad side for a few weeks and the good side for the last few days.
I have an appointment with another rheum tomorrow, still associated with Duke, as my last resort before leaving the state to see an expert. The vasculitis foundation recommended someone (Dr Allen) from Duke rheum who doesn't accept new patients unless there is a very extenuating circumstance. The first doctor as well as tomorrow's doctor work in the same department so I assume they discuss and communicate with her.
Any advice, suggestions, things to ask or say, or what I should be expecting at this point would be greatly appreciated.
I got myself established with rheum who felt there was nothing to suggest anything other than the acid reflux. My limited wegs seemed well under control and didn't seem to be anywhere other than the area behind one of my eyes and tear gland.
Fast forward to early Dec. I've been having sinus pain above that eye and nosebleeds on that side. I went to the rheum and had bloodwork done and was given antibiotics in case it was just a stubborn sinus infection. I got a call a few days later that my weg's "test" (ANCA I assume) was "essentially" negative, so it was unlikely that I had wegs at all.
This got me very upset because it was diagnosed from biopsies and we all know that there is no blood test that can prove or disprove with complete certainty. I don't know if the nurse thought I was stupid and tried to simplify the message, or if this is what the doctor truly wanted to relay to me.
Currently, I am having the sinus pain which has spread to my nose, on/off ear pain, and minor nosebleeds a few times a day... all on the weg's eye side. I've had what I assume is the nasal crusting on the bad side for a few weeks and the good side for the last few days.
I have an appointment with another rheum tomorrow, still associated with Duke, as my last resort before leaving the state to see an expert. The vasculitis foundation recommended someone (Dr Allen) from Duke rheum who doesn't accept new patients unless there is a very extenuating circumstance. The first doctor as well as tomorrow's doctor work in the same department so I assume they discuss and communicate with her.
Any advice, suggestions, things to ask or say, or what I should be expecting at this point would be greatly appreciated.