Not diagnosed: Lots of symptoms and would like... - Vasculitis UK

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Not diagnosed

yorkshiregirl44 profile image
11 Replies

Lots of symptoms and would like to get to the bottom of them. If i susspect vasculitis what tests doiask my GP run and can primary care do any of these tests or do i need to see a specialist frpm the onset.

Thanks

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yorkshiregirl44 profile image
yorkshiregirl44
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11 Replies
longbank123 profile image
longbank123

I see my consultant every 2 weeks, he told me if I have any problems to go straight to him & not my GP. He said my GP only has a outline of this rare disease and would probably miss some general signs of problems. I have seen him every two weeks for the past 2 years.

Linmur1957 profile image
Linmur1957 in reply tolongbank123

You are really fortunate you have a good consultant. My health centre is really incompetent

yorkshiregirl44 profile image
yorkshiregirl44

Thanks

JElsom profile image
JElsom

GPs will probably have quite a limited knowledge of Vasculitis. There are some general blood tests that they can do such as inflammatory markers which if raised can be indicative of Vasculitis along with a lot of other things! Depending on your symptoms there will be other tests they can do to rule out the more common things. I'm guessing most people do get their diagnosis of Vasculitis from a hospital rather than GP so definitely push for a referral if blood tests and symptoms show possible Vasculitis.

cedric profile image
cedric

inmy case I had a rash on both legs went to my gp they sent me 4 a blood test and urine sample found blood in kidney go and get checked to rule out things

Suzym2u profile image
Suzym2uModeratorVasculitis UK

These pages from the website may just be helpful

vasculitis.org.uk/about-vas...

vasculitis.org.uk/about-vas...

JontyW profile image
JontyW

yorkshiregirl44,

Please list your symptoms and that will help us to narrow it down.

As suggested by others, you ideally need to see a specialist who has had previous experience of vasculitis patients.

sreblem profile image
sreblem

Sadly Vasculitis was not on my GP's radar at all. I was tested for everything else. I would get the GP to do a urine test and a blood -crp, kidney function. But I would advise seeing a specialist at hospital.

I echo what JontyW has advised but in the meantime these are the blood tests I have every two or three months. There are no absolutely definitive biological indicators so please be aware that absence of evidence does not necessarily mean absence of disease.

For reference, I'm 7 years on from diagnosis for WG/GWP with ENT and respiratory damage but am now in remission (and never see my GP).

U&E

LFT

Calcium/Proiteins

CRP

EGFR

FBC

ANCA

IgG

IgA

IgM

I hope this is helpful and that you get to see someone appropriate very soon.

Healthy wishes

Linmur1957 profile image
Linmur1957 in reply to

I agree that you have to be referred to a specialist. Most GPs are not knowledgeable about vasculitis. I think I know more than my GP

hof-man profile image
hof-man

hi yorkie,

go find a specialist with special interest in vasculitis. all tests can be normal. you need to find somebody with experience in the condition and a sensitive nose for it.

good luck!

hof-man (retired from working as a GP due to wegeners from 2007)

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