First ever post...I have a positive c-anca...is it possible that i have no illness at all?

[Tinkytink]

been unwell for 18 months, sinuses, throat, asthma type symptoms, fatigue...my ENT did a c anca test and it came back positive but didn't let me know till next routine Appt 7 months later.There seems to be no sense of urgency about follow up depsite the fact that i have been to docs a few times this year...noone mentioned it. I have no been referred to a rheumatologist so will see doc on Monday, but Im puzzled about this c anca test. I Can see that some negative tests may still have WG but is it at all possible that I have no vasculitis even with a positive test? Otherwise why would my GP be so complacent? it came as a bolt out of the blue despite the fact that my Mum died of WG when she was my age.Can anyone advise me? Thanks all.

[Ayla Volunteer]

My own opinion is that it is likely, with a positive C ANCA, you will be suffering from GPA (the new name for WG), Tinkytink. It could also be Churg Strauss.. Less likely is MPA or ulcerative colitis. Your symptoms fit a diagnosis of vasculitis, but you will know a lot more once you have seen a rheumatologist. Most of us on this site have experienced a complete lack of knowledge about any form of vasculitis among GPs, so you will probably have to push quite hard for a rheumatology appointment. Don't be fobbed off, you will no doubt already have experience of the disease through the symptoms your mum had. You can find out more on the Vasculitis UK website, too.

Presuming you do have vasculitis, once you are diagnosed, you will be started on some quite aggressive drug therapy and will then begin to see a definite improvement in your symptoms and how you feel generally. Good luck and let su know how things go.

Ayla

[Tinkytink]

Thank you ayla...its so nice just to talk to someone who has heard of it. I have waitied until 48 hrs before my appt to actually face up to it and consider the possibility that it could be WG, but my mum died when she was my age and that was in the seventies whn WG was poorly understood. I cant remember what her symptoms were as she died when I was elevn, only that she was ill. Thats probably why the thought never crossed my mind!!I will post back to say how it goes but i notice that the James Cook hospital gets only a 2 star rating from reviewers which is worst in my area. I really hope someone else in North East was treated ther!!

[Mooka]

Hi Tinkylink When I was trying to get a diagnosis my Rheumatologist send me to an infectious disease doctor at Addenbrookes. He did a number of blood tests and when one came back p anca positive the Rheumatologist ignored it as he said it wasn't definitive and I definitely didn't have MPA as the Cambridge doctor had suggested. My GP got onto him and he reluctantly sent me for a kidney biopsy - he was apologising a month later when I was starting my treatment for MPA. Unfortunately when you feel so low it is difficult to be very assertive with the doctors and you shouldn't have to be, especially as they should know more than you. However, if you do have GPA you need proper treatment as soon as possible. As Ayla says most GPs have a lack of knowledge of vasculitis, but that shouldn't stop them sending you to the right specialist to get a diagnosis. Is there another hospital in the North East with more experience? You have the right to be referred there if so.

Good luck, I hope you get sorted soon and let us know how you get on.

Jackie

[Tinkytink]

Thank you Jackie. its taken 7 or 8 months for them even to tell me Im c anca positive and even then, my gp went off for a week without sending the referral. I think hell would freeze over before he would send a second referral to another hospital as its taken so much just to get this referral. I should hopefully have mo news tomorrow but wont really feel reassured if they say Im all clear either since they seem to know not much about it. Here's hoping.

[eognij]

Hi if you need to consider another hospital in the North East my partner is under a consultant at the Freeman Hospital in Newcastle. He has received a good level of care there.

[Tinkytink]

Oh how i wish i had just gone there....may come back on tomorrow to get advice then . Thank you everyone for taking the time to respond and help.

[Essex-jill]

Goodluck for tomorrow x

[Tinkytink]

Ps...is it only c anca WITH pr3 that is indicative of wegeners? or isc anca alone a reason to investigate further?

[prudence]

Hi Tinkytink I receive excellent care at the Freeman , I have WG , good luck !

[Tinkytink]

I could kick myself as I asked for James Cook to avoid Durham hospital. Doesnt seem much I can do now as my appt is tomorrow.

[Tinkytink]

Sorry to be a pain but can anyone tell me if WG is likely to make me feel kind of wierd...as though i were on half power and as though blood is rushing through my head to fast. Its worse at night when i lie down but its almost like a pressure cooker. I also feel short of breath when i lie down. getting to a point where I cant tell where its plain old hypochondria kicking in!!

[Tinkytink]

So i saw doc today and he said sounds unlikely i have WG...not sure why..my c anca was very low (40)? So is repeating it to see if its now negative. Also doing pr3 and mpo and p anca and have to wait two weeks now...not sure that I feel reassured as i dont know if they have dealt with wg much

[Shezian]

Hi Mooka, did you have any kind of abnormalities of the kidney for them to consider a kidney biopsy? I have done numerous 24 hour urine tests and blood tests for kidney. So far there is no protein in urine and blood test normal.

Thanks Sue