False High ANCA?!

[LeanneN]

About 18 months ago I had terrible flu like experience with extreme confusion and blood tests 6 weeks later showed high ANCA p type and has been slightly elevated on a few occasions since.

Since then I’ve been having issues with sudden breathlessness, chronic chest pain with cough, and black hands. All getting worse over several months. I had a scan last year that noted a nodule in my right lung but wasn’t told and the consultant failed to follow up despite being suggested and instead was discharged without explanation and orally told inflammation of chest wall and then later in same conversation that there was no muscle skeletal problems. Also told it was a false high ANCA test because it hasn’t been as elevated since. I am not sure what I am asking but am alarmed. Has anyone else had similar and what is best way to deal with hospital that fails to make a considered diagnosis rather than snap judgement? I also have PA and Hughes.

[AmyS1]

Sounds like vasculitis speak to someone on the helpline. Unlikely to be a false negative ANCA.

[amms43]

Definitely speak to the helpline. I started with fairly similar symptoms (except the black hands) and other symptoms developed too. Carried on for years until the GP told me it was all in my mind. Then I got really angry and started a private search. I got a definitive diagnosis after only 6 weeks. If it is vasculitis, treatment is vital.

[AndrewT]

Dear LeanneN,

A 'False' High, bearing in mind you are NOT well? Now I'm not an Expert, by any means, but Something Sounds- generously speaking- a little 'Off'. Can you get a Referral to Addenbrookes Hospital Cambridge, Clinic 12? Dr David Jane's Team are based there. Dr Jane, possibly Professor Jane by now, is the Leading Expert on ALL 'things' Auto-immune, in this Country. You don't say where you are from Leanne, I'm assuming the UK, although we DO have 'Overseas' Members on these pages. I'm rather concerned, I have to say, about your 'Black Hands' are they Completely Black, or only in 'Patches' or 'Parts'? Have your current Consultants/ Doctors said 'Anything', about them? (Apart from 'You have black hands, that is.)

I'm also, a 'Tad' concerned, that a Nodule was found- on your lung- and now you have a cough- especially since you are experiencing Chest Pain and 'Breathlessness'. There could, of course, be absolutely no connection whatsoever....COULD BE 'Nothing'.... Surely worth Finding Out though? Do 'bear in mind' that Vasculitis Doesn't always Show Up, on Blood Tests, so a False Negative is ALWAYS a Possibility. Do speak to the Helpline, by all means, it is what it is 'For' after all- just make sure that you 'Mention' Everything, even Things not revealed here. (Dry Skin? 'Tummy' troubles? Achy Joints, Itchy Skin? Headaches/ Sensitivity to light? 'Strange' Pains, here and there? Feeling 'Groggy' generally- though you DO refer to this in your Post. Pain in you more Private/ Personal areas?)

Do try to get a 'Referral' , to Addenbrookes, Leanne. I'm sending you my VERY best wishes.

AndrewT