Now I'm getting angry

[PJ2010]

Just had my six monthly tests and appointment with my specialists and I walked out feeling like it's all in my mind.

This idiot doctor tells me all my blood and urine tests are normal and my X-rays show no signs of infection. He asked me who diagnosed me and how was the diagnosis confirmed. All this information is documented in my files and he obviously couldn't be bothered to check.
I said angrily that they did a biopsy on the pseudo tumour behind my eye that was progressively sending me blind.

After nearly 5 years of living hell with this disease and this quack was trying to throw doubt on my diagnosis. What a waste of time.

I complained to him about the infection in my sinus. About the great chunks of green and yellow coloured scab material I have to blow from my nose constantly. His comment was I have no infection and smoking does that.

I told him the night sweats have returned and my eyes are so sore. I asked him if something might be done about my hearing which has noticeably and recently got worse. I told him my taste and smell is gone. He has ignored all this.

I recently tested positive to an FOBT test showing I have blood in my stools. I'm having no luck in getting a colonoscopy. I asked him if he could fast track this as I've read WG can cause bleeding from that area. He said that's rubbish. That WG doesn't cause bleeding from the bowel. Again he did nothing.

In the last week I'm noticing a lump growing rapidly on the side of one nostril. I had this happen when my disease was active.

Im getting to to the point where I'm giving up on the medical system. I think to myself that it's probably better I cut ties with these idiots that I think might think I'm a hypochondriac. Just let the disease go for it and deal with the consequences then.

[Jaha]

PJ,
I am sorry that you are having to deal with poor healthcare for such a serious illness. I have also been dismissed by a specialist, when I know that issues really need addressed. You need to get to another facility and get some immediate help or go straight to the administration about this doc. We know our bodies better than anyone and have had many bad situations to deal with, it is hard to believe that doc's would just pay you no mind. Please go seek help elsewhere, you have come to far to give up now. Best wishes to receiving the care you deserve.

[loisann11]

Do not give up, consequences are too great. I would find another Dr. I have been told that kidney or lung biopsy is the best but those organs have to be involved for them to work. My husband and daughter thought I was crazy when I had those "green chunks" in my nose. So glad you mentioned it and now I know I wasn't. They did go away after I was diagnosed and treated. I did have very minor kidney involvement that I didn't even know about it and had the biopsy done on that. Have you had a full set of blood work done? I would guess yes but I know my creatinine level and a little blood in urine is what gave it away. Stuff you can't see but is there. I see a kidney specialist for treating my wegeners and he really knows his stuff. I also had problems with my eyes, red, watery, itching, scratchy. Turned out to be side effect or the prednisone and now a lot better once cut down my dose. Most all of my problems have turned out to prednisone side effects. Not sure about all the stuff you have done so far, but don't give up. Find someone who knows about this disease and go to them. Good luck!!

[Wegetarian]

So sorry to hear that. Its awful if you can't trust your docs. Is your PR3 level low, and was it low or negative when you were diagnosed? Mine was never really high, and the rheumy I last talked too said it wasn't all that reliable in measuring my disease activity, but I guess for many people it will give away if a flare is going on.

I actually had the opposite happen to me. I was diagnosed last summer, but I only had Wegs in my nose and I guess if you look at the strictest requirements for diagnosing Wegs I wouldn't have met them as I guess the nasal biopsy wasn't conclusive. So was hoping maybe I really didn't have Wegs when I was feeling so well 8 months later. Well now it attacked me in the kidney, lungs and throat and the kidney biopsy proved wegs so at least I'm not uncertain anymore. Sigh.

But please push for another doctor instead of just waiting for it to get worse.

[PJ2010]

Thanks you guys,

I don't quite understand all the figures. Two weeks ago a dr said my ANCA levels were 200 in the positive and that that's what they measured when the disease was at its worst 4 odd years ago.

The new results Anti-Myeloperoxidase AB (MPO-ANCA by Bioplex): 5.1 A1 (normal less than 1).
The PR3 ANCA showed a negative result.

All I know is that my diagnosis was a result of five days in hospital with intense and intrusive testing at the peak of the inflammation. The biopsy sample was from inflamed tissue behind my right eye. They made an incision in my top eyelid and somehow got behind the eyeball.

I have since put in a complaint to the hospital. I rarely feel like I'm being treated in a correct manner. They gave me a copy of all the tests done. Everything looks ok as far as I can ascertain. Even though the tests show things to be ok why is it that I feel like I do? They say this disease is always active and it continues to go through its course.

In other words, regardless of these tests the disease progresses continually to its eventual destructive outcome. Is that true?

Reading through some of the scientific publications I saw where upon the death of some WG that something like 30 percent of sufferers showed significant heart disease caused by WG. They didn't die from that but eventually it would have taken its toll.

Can anyone clarify this? Does this disease stay on course and slowly keep on damaging our bodies?

Sorry if I sound morbid but these are the kinds of questions no one seems to answer.

[Dirty Don]

I'm not sure I can dispute the theory of the disease always eating away at us, BUT the disease can be controlled, is controlled more than adequately for most peeps if they get the correct help in time...that's a huge issue. I don't know what your options are, but I'd fire those docs just for alluding to our mortality in such a way to you. There are many instances on here of people who have borne children, lived into their 80s...and so on. Those docs are wrong and have no right to frighten you like that. Keep us informed.

[BarbW]

Is one C - anca and the other P-anca?

[cjhnsn29]

I would find another Specialist that is with a big office or hospital and keep pushing. My internal medicine Dr is great and understanding. I have been where you are with Dr's but truly there is one out there that knows how to deal with this. Have you went to an Internal medicine Dr yet? Believe it or not my ENT was the first to diagnose WG. Don't give up. Take it from someone who felt like you. It made my WG worse and in the long run, made more problems for me and several surgerys due to giving up.

[PJ2010]

Well, my wish has been granted. I've now been dx with bowel cancer. ��

I really didn't mean literally 'I wish I had cancer'!!!!!!

Oh well, me and my big mouth aye?

A good friend of mine who has MS told me she thinks I'm just greedy ��

[Dirty Don]

A golf acquaintance asked me how I was doing, asked if I had had a heart attack, common among us old farts! I told him, NO, I just wanted to be different than my other heart buddies...so I went and got an AI instead...much more attention and stupid questions associated with it! I love it! NOT!