I am at my wits end and feeling very frustrated. I have seen 5 specialists and nobody can tell me what is wrong with me or what might be happening to me.
I have a positive p-ANCA and neg MPO. All other blood tests normal, inflammation normal, autoimmune normal, no protein in urine, kidney and liver blood test normal.
My symptoms are ringing in ears for 5 seconds anywhere from nothing for months to a few times per day, sore feet and hot hands, sometimes headaches, lately burning eyes and slight nausea on and off night and day, but not enough to be sick. I also had excessive fatigue for one week and now that has dissapeared.
I can have months where l feel pretty normal and then weeks where l fall into a heap.
I know the p-ANCA alone means nothing, but when do the doctors actually take notice? When my organs start to fail? Is that what they are waiting for? If that's the case l can pretty much diagnose myself, not sure why l would need them in the first place.
I would travel anywhere in the world if someone could diagnose me. Maybe visiting a vasculitis centre would help. Either to rule vasculitis in or out.
The doctors here in Australia seem to say, that l don't have vasculitis yet, as l would be very, very sick, but they cannot tell me if in 5 years l will have it or not. But that doesn't help me now. What if l am in the early stages of it? Not sure how quickly something like MPA progresses as l guess it different for each individual, but it would be nice to know what the heck is going on.
I asked then if l can be blood tested for other antibodies like BPI and elastase etc, etc and they said not sure if these labs here can test for those, as l was reading that some people can test positive for other antibodies with the p-ANCA apart from the MPO. So this may lead me to some kind of diagnosis.
Has anybody had an experience with this before?
I can't just sit back and wait to get diagnosed l need to find out why l am feeling so lousy at times, my body is telling me something.