so I’m going to be having anca blood test Wednesday

[Leanne19862]

so a bit of back ground, I have struggled with pins and needles in my arms and numbness in my lips at night when I sleep for quite some time however fades never understood why. Anyway about 4 weeks ago I was woken in the night with the most awful itching on my heel. It had claimed by the next day. Least forward a week I had a terrible pain in my calf followed by an inflamed heel. I decided to go to doctors as it was looking like a possible inflammation under the skin. Doctor prescribed antibiotics for 7 days however 7 days later it was still there but now with 2 purple circles of skin and a few tiny little ones. So I took myself back to the doctors and they wanted to rule out blood clot so sent me for yrgent bloods. I was not aware but the gps actually had a meeting amongst other gps who decided they wanted another gp to look at it the next day but one that specialised more in skin. So I went and see him and he ruled out any type of skin cancers but said that is purpura and may be linked to small weasel Vasculitis. Blood results then came back all ok except Serum creatine kinase level: 742 so is elevated gps then had another meeting and have said they are contacting rheumatologist for advise and have booked me in for ANCA bloods on Monday. It’s all come out the blue I just thought I had a small infection however drs seem more concerned

[Support_helps]

smart to check for ANCA as elevated creatinine and itchy purpura were symptoms of my ultimate diagnosis ANCA vasculitis......hopefully you don't have it but good to check as it can damage organs potentially rapidly, good luck!

[Leanne19862 in reply to Support_helps]

The purpura is calming now it’s not gone but isn’t angry anymore will this to show up or do you need to be on a ‘flare’ to get a positive result?

[Support_helps in reply to Leanne19862]

as far as I know if you have ANCA you don't need to be having an active flare for it to show up in an ANCA test//

[EGPAGuy]

Hi Leanne. Just be aware that the ANCA test is not always a reliable test for vasculitis. I have never had a positive ANCA test but have ANCA vasculitis (EGPA). A large percentage of us never do. You need to try and see a specialist for a vasculitis diagnosis. Where do you live..this site could potentially point you to the nearest specialist for a GP referral. Best of luck with your journey.

[Leanne19862 in reply to EGPAGuy]

I live in Kent

[Main1234 in reply to Leanne19862]

Hi might be worth contacting the vasculitis helpline. They will support you to find a consultant in your area .

Good luck

[EGPAGuy]

Can anyone point Leanne in the right direction? If you can get to London easily then Guys and St Thomas or Hammersmith hospital have vasculitis clinics

[AmyS1]

You seem to have an excellent GP!!! Be very thankful. They are extremely over worked in the current NHS situation!!

[lollypocket]

I am in Kent and originally saw Dr Mike Batley at KIMS hospital as a private patient. I don't think he works there anymore, but think he still does private at other hospitals. He signed me on as an NHS patient and saw him at Maidstone Hospital.

Good luck xxx

[Leanne19862 in reply to lollypocket]

Thank you. How did you get them to see you as a nhs patient please

[lollypocket in reply to Leanne19862]

Hi, I saw him twice privately and he then added me to his NHS list. I had been waiting to see a rheumatologist for some time and was lucky that my husband's employer covered the whole family on his health plan.

[lollypocket in reply to lollypocket]

Just to add that this was back in 2015.

[oldtimer2]

How wonderful to have a GP practice that is interested enough in their patients to discuss them and think about rare conditions! So many are so overwhelmed that they don't have time to think. They should be able to support you well with what will certainly be a specialist decision.

[Electra1]

Hello Leanne, sorry to hear you're unwell. I have vasculitis and at the start of my journey became more and more unwell whilst the gp practice kept mulling over and over what it could be, until I became seriously unwell. My message to you is to ask to be referred to a consultant specialist in vasculitis...perhaps you could find out if there's someone with a specific clinic nearby or a larger city hospital nearby. My advice is that a good and speedy diagnosis will aid your longtime recovery. If you have to, be pushy and keep some notes about your journey. Vasculitis is a slippery little devil and you need to keep on top of it...sending you the best of good wishes......and hope you find the treattreatment you deserve and need soon.