How to get a diagnosis?

[Shadow35]

Hi. I'm would like to know how long it take for a diagnosis if you don't have anca in the blood test. I had skin problem but i wasn't able to get an appointement with my dermatologist in time to take a biopsie and she didn't want to take a look at the picture i took. Now i think it's affecting my lung and only prednisone keep my symptom under control. I also have problem with intermittent pain in my face, close to the ear and eye. My eyebrow always drop during that kind of flare but it never stay long enought for the doctor to do something. It's been three years. My symptoms always moving somewere else after few months and it's always too late when you finally see the right specialist for that exact problem. Do you get diagnosed only when you have permanent damage? I already got a diagnosis of spondyloarthritis and for that one i had to stopped being able to take care of me and walked with a cane. I'm pretty sure i'm closed to the finished line because almost all the easy to find deseased are check.

Thanks for your help.

[Investigator1]

Hi Shadow35. If they are looking for ANCA they can find it fairly quickly, but if they don’t know what they are looking for it can take a while. I know it sounds daft but ANCA can only be found in the blood so normal blood tests will only show Inflammation, anaemia etc (as it did with me) so it took them 8 weeks to find I had positive ANCA PR3.Hope this helps. I have been to my GP and specifically asked for a blood test to test my ANCA

[Shadow35 in reply to Investigator1]

Hi. I already got test for anca but it's negatif. It's the reason it's so long everything is negatif. I just have inflammation. It's been three years. I think they gonna need to do a biopsy but to do this, the problem need to stay at the same place long enough.

[Mooka]

It took me 19 months to get a diagnosis. My rheumatologist, who specialises in vasculitis. Was stumped so sent me to an infectious disease doctor who went over all my symptoms and took loads of blood tests and his best guess was right. Rather than doing the treadmill that you have been you need someone who is going to go over all your symptoms from the start. In answer to your previous question my symptoms were a cough, overwhelming fatigue and night sweats. I don’t know how your health care system works but ours is very slow. Good luck.

[Oztrax]

i tested negetive for ANCA nad ANA 2 years ago, but definitely have vasculitis with inflamed vessels over my head and neck. I tested positive to HSP70 antibody which Is a bit unknown by most specialists.

[Shadow35 in reply to Oztrax]

Thanks. I don't know the hsp70 gonna look for more info. It's taking so long to eliminate all the regular blood test and problem. The vessel on your head does it make bump that's hot like on the temple? And pain in the face? I never had varicose veins before and now when i'm feeling very bad they pop out. Some stay and some goes away.