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Vasculitis UK
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DCVAS Research Study for Primary Systemic Vasculitis Join Now!

Please follow this link for more details

vasculitis.org.uk/news/dcva...

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Just a reminder regarding the DCVAS Study - the aim of the study is to develop new diagnostic and classification criteria for the different types of primary vasculitis. This study will allow improvement on the ability to distinguish patients with vasculitis from those who do not have the disease and to distinguish between the different forms of vasculitis. Recruiting is now taking place - for people over 18 years of age with primary systemic vasculitis and diagnosed in the last 2 years. Please ask your doctor to refer you to the DCVAS team in your hospital trust. Follow these two links for more details. 3500 patients have already signed up and 5000 are expected to sign up this next year.

vasculitis.org.uk/news/dcva...

vasculitis.org.uk/content/d...

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Hi, welcome to the whacky merry-go-round. One say yes another says no and yet another may say maybe this or that. One diagnosis says this then bloods say no. one specialist says this and another says ERR and re-does everything good or not who knows, maybe double checking months apart.

I have a diagnosis for one thing but symptoms say another. So who's right DRs interpreting test results or symptoms? I have no idea I'm just feeling whats happening to me. At there seems to be a check list that has to be gone through and if you fall one way or another they're stumped. Maybe thinking I'm a nutter and making it up. I have no idea, apart from the fact I know how I'm feeling or what symptoms I have that make no sense to me let alone them.

I can and do accept some of what they say but when they look at you blank because the test say something else to what you are having/experiencing I do sometimes wonder.

Is it an over lap? Am I going mad? Am I a raving hypochondriac? The later no chance I am 100% sane and there is no way on earth I wish or want to be unwell and in pain, which no way is that the power of the brain or subconscious. All my life if I'm unwell or in pain I take some pain relief and go to bed. I certainly don't want a doctor or any one else near me. A case of I'm not well. Leave me alone and let me get on with it. So when I do say something is wrong rightly or wrongly I do expect them to listen and have some sort of answer.

Trouble is most of the time they don't have an answer. So welcome to the crazy merry-go-round.

Good luck. X

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