Does a negative ANCA rule out diagnosis of Wegners

Hi, I have had WG for four years and even though I am in remission and my ANCA results are good I still have areas which need treatment i.e. my trachea (nine ops up to now) and eyes. I also have days when I feel really tired. Surely if your GP does not know what it is they should keep looking and refer you to a specialist, I know I was initially back and forth to the docs for four months before I ended up in hospital. Even if it is not WG it must be something!! I really feel for you as I know how frustrating it is when nobody listens. Keep on at them for a diagnosis and I hope you get some treatment soon.

All the best Jackie

[quote:2a27aa1d29=\"Debsh23 \"]Two years ago it was discovered that my CRP & ESR (inflamatory levels) were considerably raised. In this time I have had many different test to try and find out what is casuing this. Each time I have the blood tests the levels are getting higher. I have been suffering with extreme fatigue and some muscle pain, Four months ago, I started getting extreme nasal congestion and sinus pains. My Doctor decided to do and ANCA test as she suspected Wegners. The ANCA test came back as negative. AS such the general physician has discharged me as she is at a complete loss. The nasal congestion is getting increasingly worse, and I have suffered a lot of nasal crusting and have now developed a hole in the septum. I was wondering if you knew if you can still have Wegners even though the ANCA test is normal? Should I seek further advice?[/quote:2a27aa1d29]

Hi Debsh23

Although the ANCA test (at this point in time) is still considered to be the \"gold standard\" and therefore is often used and gives a correct diagnoses, there is still on going research which is looking into the possibility of other means of testing. In my case it has been proposed to me that although my ANCA may be low or in deed -ve WG's may still be grumbling away (and I have usually felt pretty rotten at the time). I assume that with your symptoms (nasal crusting and hole in septum) that you have already been referred to an ENT department and are also under their care and if not then I would advocate that perhaps you should be - don't you think so?

My ANCA results have come back negative but i have a confirmed diagnosis of WG.

Hi.I was diagnosed in 2001 with WG. I was extremely ill spending practically 2 years in Chapel Allerton Hospital (fantastic care) and have had spells in there on many occasions. I am now completely deaf, have saddle back nose and damged lungs. I now know that I have suffered this Illness for many years before diagnosis. A biopsy, together with Blood samples determined my illness. I am 70 years of age this year, enjoy life very much but have to pace myself.