Diagnoses

[Hazbaz57]

I have been unwell for the last 18 months on and off, I have had 3 blood tests that have come back with a positive ANCA result, my GP didn’t tell me for the first 3 months until my second result come back, now I am on a waiting list of approximately 34 weeks to speak to the rheumatology department, any help with how long it roughly takes to be diagnosed or if there is another route I can go down

Thanks

[May7]

I am truly shocked. ANCA Vasculitis is a serious disease and needs sorting out soon. You've already waited 3 months too long, and I would make a fuss if I was you. I know that they are behind since covid, but this is ridiculous in my opinion.After my blood tests which had revealed ANCA Vasculitis, there was a slight delay due to one doctor being on holiday, but I was sent an appointment letter for the Rheumatologist for an appointment which worked out at about 10 weeks after the bloods were taken. My Rheumatologist put me straight onto a high dose of steroids to bring the inflammation down, and other meds followed. My blood was constantly monitored afterwards, weekly then monthly and so on.

Some others on here might have experience of getting past these sort of barriers and have advice for you.

Best of luck and let us know how you get on.

[Hazbaz57 in reply to May7]

Thank you,

I don’t know very much about the disease other than what I have read online, I will be calling the rheumatology department today to try and discuss the what is going on, my GP has told me I should be seen as quickly as possible but he cannot do anymore than he has already done,

Thank you for your reply

[juli-pa]

Definately call someone you cannot be waiting. I was told there was a backlog & I would be waiting a while to see a rheumatologist I wasn’t diagnosed with Vasculitis at this point. I called doctors to see if there was a number I could call & told her I had been in pain form8 months I could hardly walk at this point. I got a call back & got appointment for the following week. You really have to push these things don’t let anyone con you off. My condition left me with damage to my kidneys & maybe if I had been seen when I first raised my concern with GP 8 months earlier this may not have been the case. Please push this.

[Hazbaz57 in reply to juli-pa]

I have just got off the phone with the referral clinic, my referral has been given to the rheumatology department, they now will grade it as either urgent or routine appointment, even if it is urgent I have been told I will still be on a waiting list for about 15 weeks, my first positive result was back in March, but have had symptoms for over a year, so reading up online about ANCA has been making me worry a little bit, the clinic told me to ring them next week for an update

[juli-pa]

That is terrible. I don’t know what to suggest for you. maybe call Vasculitis helpline someone there may be able to help you. It’s is not good enough you need to be seen urgently. Good luck.

[Hazbaz57 in reply to juli-pa]

Thank you for your replies I appreciate it