lupus?: gp says i dont have lupus as have been... - LUPUS UK


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anbuma profile image

gp says i dont have lupus as have been tested fro it btu no one has ever told me so -and he has treated me individually for lupus symptoms-scalp condition nasal sores facial rash - .definitely not the rheumatologist -he never did any bloods and as far as I know no specific blood test for lupus.

feeling so ill tonight-feels like my everything inside my stomach has dropped into my lower abdomen -it feels so heavy and abdomen definitely swelling more and more every day.trousers do not stay on over tummy and have to keep hoisting them up .could it be a prolapse?thinking A&E if no better and if i wake feeling the same and not able to walk dogs.dr said he would speak to long would this take?

13 Replies

The ANA blood test IS specific to Lupus, and positive in about 95% of patients with SLE. Without it Drs are very reluctant to give a diagnosis of Lupus. You could maybe ask the surgery for a copy of all your blood results, and if it's not on there, demand the GP tests you before he sits there telling you you haven't got Lupus. If he hasn't even run the test then he is being positively idiotic!

it was someone on here who said htere was no blood test specifically fro lupus

dgleds profile image
dgleds in reply to anbuma

that test ANA, kinda sets you up for it...especially if its speckly...and high reading like 1:320 or 1:640 etc...and 4/11 criteria or more...etc

Hey..if GP treated you individually for lupus symptoms-scalp condition nasal sores facial rash - .did he give you plaquinil or hydroxychloroquin? If so, it can make your stomach be puffy at times...I just discovered this...very recently....I have to make sure I eat something substantial when I take that pill...or boom looks like instant baby bump (almost)...

anbuma profile image
anbuma in reply to dgleds

hi no I have never had these or heard of them,he just gave me lotions/steroid creams and sprays(nose) to use

dgleds profile image
dgleds in reply to anbuma

so he really is just treating this and that, with this and that...If you don't think you have had an ANA test or all the other autoimmune test they do, even thyroid too and RA etc....Ask him to see your results..(they are your results). Ask somehow to see another GP, or nurse practitioner, and tell them what you feel...I find many Doctors have big egos, but it is your right to see your results...If you have lupus and need plaquinil, it "might" be the one pill fix a lot of the stuff happening to you...

Whathappned profile image
Whathappned in reply to anbuma

Sorry Anbuma but you confuse me. How long have you thought you have had Lupus because it seems strange that you have not known about the tests or the drugs used. I must admit it was the first thing i checked out once it was suggested to me. The basics can be found on Lupus Uk and st Thomas's website as well as many other sites. i also bought a book on the subject to try and get an understanding. Another thing to suggest is to always request a patient copy of the letters the hospital sends to your GP. Then you can see what they have understood from your explanation in the appointment. It also gives you a basis to ask questions from and gain an insight in to what they are thinking.

I must admit I find all your problems quite confusing and I have no idea if they are Lupus related or not. I could imagine that a 10 minute appointment would not leave much time to go through everything. And , to be really honest, although I agree that dogs are very aware of their owners and their illness's, telling the GP will not necessarily help you in your aim to be taken seriously.

PLEASE, PLEASE, don't take offense I just think your better to mention your symptoms x

anbuma profile image
anbuma in reply to Whathappned

Hi there.probably fro the last 3 years.diagnosed with fibro in 2005 -FROM SYMPTOMS-(reason I say this cos now they dismiss symptoms in preference to bloods /scans etc)and no changes between then and 2011 when things struck with vengeance,knew it was something more than just fibro,.gp never explains bloods just saying they are normal and if he wont recognize any condition from my symptoms then he wont prescribe me /tell me of drugs used fro lupus??recently read that lupus starts with raynauds disease and lies dormant for many years before attacking .mine began with raynauds,. rheumy only diagnosed fibro cos didn't have any other symptoms at that time other than "crawling skin" joint and muscle pains.less knowledgeable then than now .nasal sores/skin rashes.facial swelling =lupus.

keep going back to gp with the same worsening and new symptoms btu he doesnt budge.

dgleds have had all bloods including ANA btu not have results of that imparticular.according to other member s on various forums(fibro/lupus/thyroid etc)there are many causes of abdo swelling-gallbladder related(including removal),adrenal fatigue..adhesions.thyroid related,lupus -affecting abdo lining,cysts fibroids.etc

Whathappned profile image
Whathappned in reply to anbuma

Hi Anbuma

You seem trapped with the same doctors. I started with symptoms approx 3 year ago. I was lucky to have all my blood results as a friend at work took my initial bloods and gave me a print out saying see your GP, it looks like you could have Lupus. At first he wasn't too pleased and referred me because he felt he should but said healthy people can have raised ana. My ANA was 1:320 but my DNA was borderline. But after that he has been very approachable, agreeing with me when I suggested CFS/me when my initial rheumy said nothing she could do.

I can feel your frustration and worry. I try not to but I always have a worry they are missing something now because they never commit to a diagnosis. I am lucky because the second consultant I went to see lives nearby and must have seen me as Labourer on our house extension. I was in and out the house, knocking down walls, kneeling on the loft beams putting down under floor heating and carrying full sheets of plasterboard with the hubby up two flights of stairs. Now I struggle to get up those stairs not carrying anything. When I get in from work my dogs no longer bounce around for a walk ,no, they go out in the garden then race upstairs to lie on my bed with me. They don't even try asking anymore!

Anyway I did eventually get taken notice of (and it can't be because he's a neighbour lol) but he wasn't happy leaving me with high CK and muscle symptoms so referred me to a different rheumy and I'm so pleased as I am on treatment because that ck continued rising.

I'm not sure where you live but what about changing GP. I realise it means going through it all with them but a new set of eyes and ears without any preconceived ideas is what you might need. And make sure they refer you to a different rheumy. Again where I live on the outskirts of NEWCASTLE but in Northumberland I have a few options.

Good luck and don't give up persevere x

Shuman100 profile image
Shuman100 in reply to dgleds

Wow...I take hydrochlorquin. There are some days where I look pregnant. Smh! This medication is probably apart of the reason.

I saw a DR on this morning he said if bloods come back in the range even slightly raised they rule it out and never test you again and this women had thyroid symptoms for 7 years without treatment so it just goes to show

Try to see another doctor..I know that's almost impossible where I live, but if your Doc is away and has a replacement, try to get in. Or if they have walk in clinics, or a nurse practioner that may listen better.

3 months ago Paul_Howard ADMINISTRATOR

Hi kkgirl,

The ANA test is positive in about 95% of people with lupus, which is why so many doctors are reluctant to make a diagnosis without a positive result. It could be that you are part of the 5% or it could be that your symptoms are of another condition. Who are you currently seeing regarding these symptoms? Is it just your GP or are you also seeing a specialist at hospital?

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Hi anbuma, I've copied and pasted this post from the administrator of this site, Paul Howard, from 3 months ago. There are lots of similar posts under the subheading 'Getting a Diagnosis'in blue on the righthandside of this page. I know you aren't a fan of mine so I thought perhaps seeing it explained by someone else would help you be able to tackle your GP about it.

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