Google, C-ANCA, and PR3. Add to that, leg pain, eustachian tube issues, and fatigue. Almost always, the search will result in a likelihood for Wegener's.
I went to the University of Utah. I spent 20 minutes with a wegs specialist. 1 hour with his resident. No tests were run, because I brought all my labs, 3 months worth. They could not give me a diagnosis. That is excellent news, for now. That means I get to put off any toxic treatments. They wanted me to stick around and see their ENT and neuro people and run more tests, but I was worried about money. If the Dr. was at all concerned, he would have insisted. He did not.
Treatment for wgs is often chemotherapy. When wegs doesn't kill a patient, the toxicity of treatment does. I am thrilled to not have to go through this. Thrilled.
What I'm not too happy about is still not having answers. I go back to my abnormal labs, and the (more mild) symptoms I have that mirror that of a wegs patient. I call them mild because so far I only have leg pain, terrible fatigue, eustachian tube/ear infections, and flu-like symptoms. There is NO swollen tissue to biopsy. Without a biopsy a diagnosis can't be made. My only concern is letting things get to the point were things are swollen, ie lung infection or serious respiratory issues. It may or may not ever happen. It will always be in the back of my mind.
So, the plan is that I'll go back every three months. I'm not sure about that, Paul wants me to. I'm okay to see my Arizona Dr.'s since they're seemingly on track. For now, I have one more follow up with Utah in April.
The Dr. said he can't say I have wegs, and he can't say I won't develop it. All he can say is I have this abnormal antibody, with unexplained symptoms. I take that as a good thing!
