As you may know, I am a bit skeptical of my diagnosis. Well- now both my immunologists think it IS Wegner's. I had made a decision to go to the ENT and ask about a biopsy - just so I could be more certain. Now I am confused again. He is inclined to think along the lines I was thinking. I am not sick enough to have Wegener's. But…he says some folks do have a very limited version….
To make things even more confusing, my sinuses are quite clear right now - so he says there will most likely be nothing, or very little, to biopsy, which will still leave me in limbo. So….now he has referred me to a pulmonologist to see about a bronchoscopy. The referral has been sent and they will call me tomorrow to set up an appointment.
So - once again - I am on hold.
I must say, they are all good folks and interested. Yesterday I went to the allergist/immunulogist, who thought it was likely that I do have WG, but agreed that I should get a definitive test. At 8:30 this morning the phone rang, waking me up. It is the allergist. "Do I have any problems when I take NSAIDS (aspirin and ibuprofen")". When I told her no - she said "OK - that shoots that theory. I was looking into Samter's Triad - but if you can take NSaids - that is not the problem. Have a good day". So - at least I know she is thinking. She is such a nerd - in the most complimentary sense of that word. She is like a bull dog with a bone about this diagnosis.
Meanwhile - I continue my wheat-free life at the suggestion of my PCP. Not too bad so far…
Tune in again in the next 10 minutes. I am sure the diagnosis will change. This pulmonologist will be my 9th doctor!! At this point, I truly do not care. I want a firm diagnosis. If it is WG, I can take the medicine and deal with it. If it is not - then tell me what it IS, and I can deal with that too. I JUST WANT TO KNOW FOR SURE!!!! GRRRRRRR!
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