"Family Dr. said he thinks the Wegs. is there but reluctant to put me through the infusion process if the Rheumy doesn't think it's needed." This kind of thinking from a specialist is what caused me to go two entire years with every one of the specialists I saw pretty much agreeing I had Wegs, but no one was really wanting to start treatment for it until they biopsied something and knew for SURE. And in that two years of tests, tests, tests, more tests, more specialists, losing health insurance for a year and not seeing anyone at all.....my health got so horrid that I have no idea how I lived other than God was not ready for me yet. It's funny - about 2 1/2 years ago I started studying my own blood tests for the past few years, started researching the results on the internet, and I'm the one that found the whole "Wegeners or Churg-Strauss Syndrome" link. I'm the one that asked my nephrologist at the time in March 2013 to test me for the Churg-Strauss....so he did and the ANCA panel came back negative on the pANCA and cANCA, but it was off the charts abnormal for the PR3s (Wegs) and even the MPO was off the charts abnormal (could have been Crohn's).
The nephrologist contacted a pathologist friend of his, who took a look at my test results. The pathologist agreed - I had Wegeners. So my kidney doctor started me on Cytoxan and prednisone....and then one month later he second-guessed himself and took me off all the medications. He said the same freakin' thing yours did, "I don't want you to be taking these strong medications for the Wegs if it turns out you don't have it. Since you already have chronic kidney failure, I don't want you taking medications that will ruin what is left of your kidney function." So even though I begged him not to and I was bawling my eyes out, he took me off all the Wegs treatment meds and that was that. He never sent me for any other testing or biopsy or to another specialist - nothing. I had to finally contact my primary care doctor, he sent me to a university-based teaching/research hospital, and after months of seeing specialists there, they did a biopsy and found? Guess what? WEGENERS!!! I have had ANCA panels run probably 5 different times, and they have all been negative except I had a positive cANCA in December 2014. My PR3s are always abnormally high, and my MPOs are sometimes abnormally high.
Stay on your specialists' cases, or find a new one. Don't let these people push you away and not treat you. It's your life and you have to fight for yourself.
Teri from Texas
Diagnosed w/WG March 2015
"Lord my God, I called to you for help, and you healed me." - Psalm 30:2
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