Negative bloods?

[Chicklette]

Just coming through 3 weeks of what feels like the worst flare up I've ever had. 2 weeks ago I saw my gp who sent me for a lot of blood tests. I went for results today and saw a locum who said all results were negative and there's nothing wrong with me. I was diagnosed with Lupus 3 years ago, so do know I have that. But have others had this kind of result? I'm now feeling very low and doubting myself. The locum wasn't very nice and said all my pains were RSI from typing - even the pains in my ankles!

[Hidden]

hello chicklette

god that sounds familar, yes i get very confused where flares are concerned as i have just gone back to my GP this week with very bad thigh/hip/shoulder muscle type pain which has left me unable to go out or walk very far.

my GP has taken bloods which are looking for CK levels because of my complaint of muscle aches.

these results come back next week and i pray they are negative as i don t want it to be something else.

however if they do come back negative where do we go from there as the pain is still there along with the worry.

I dont understand either how bloods can read negative (so i take it we are not flaring) and yet our body is still in a lot pain.

if anyone has any answers to that i would be greatful.

About your locum, i would go back and make an appointment with your regular doc for a chat if you are still worried.

[Chicklette]

Thanks Pinky. It helps a bit to know I'm not the only one! It does seem so odd that we can feel so ill yet the bloods show nothing.

I pray too that your tests come back negative. And yes, I will find out when my GP is back and go to see her. Although the way I feel today I don't ever want to see another doctor!

[Sher78 in reply to Chicklette]

I was diagnosed with SLE 19 years ago & I get neg bloods all the time, even when I've been in a severe flare lol! Blood can b very temperamental & other factors such as medications or any other virus/infection (even if it's not apparent) can alter u're blood results.

[Rachy24]

I feel for you - It took me ages to get my lupus diagnosis because all my blood tests kept coming back negative. I too have just been in a really bad flare and all my bloods came back negative, and the registrar I saw at the hospital was very dismissive because I "looked fine"! Its so very frustrating. My GP reassured me though that it is not uncommon for people with Lupus and other related diseases to have negative blood markers and that my illness was real and luckily he is addressing the comments made by the registrar! Speak to your GP and ask for another opinion - I hope you feel better soon xx

[Chicklette]

Thank you all. I rang the doctors and asked for the name of the locum I saw this morning, so I can make sure I don't see him again! I also found out that my GP is back the week after next, so I'll make an appointment to see her then and see if she can help at all.

Makes me feel as though I'm going mad sometimes!

[jennywren444]

Hey, totally understand where you're coming from. My blood work is negative more often than it is positive. In fact, it's very rarely positive! I suffer from pleurisy as one of the main complaints if my sle, it was the first symptom I had, and I spent 2 years going to rheumatologist appointments feeling like I was making up my illness, even being told by one that there was "no such thing" as lupus with negative blood work. I challenge him to feel like this and say that! It was only when I was transferred to a teaching hospital and saw a professor who took one look at me, said "it's lupus, give her azathioprine" that I eventually got somewhere. I guess it's only because he was much more experienced that he's seen how difficult lupus can be to diagnose. I think doctors feel a little out of their depth with us sometimes. However, that's no excuse for them to be so rude! Take care and feel better soon, and you're not going mad! x

[Adamine]

Hi,

So far my bloods have always been positive (but still now Diagnosis of Lupus only UCTD) - but I now ask for a print out of the results (nice collection building now!!) - as by the time I've finished talking to them I've forgotten what they said...

It's so frustrating that the medics only judge/diagnose on the fact of that result at that time - and we limp off feeling as if we're fakers a bit deluded and making it all up...

Yet we live our life with odd, strange, frightening things happening to us on a daily/weekly/hourly basis and have to cope and struggle through...

Xx

[nicky1234]

hi pinky

sorry had to laugh at the pain in your ankles being caused by typing.

some docs are stupid. you do get negative blood results with with lupus its very common.

makes you wonder why the doc you saw is a locum.x

[Chicklette]

I agree! A nurse friend said I have to remember that the locum probably knows very little about Lupus. Well, waiting for usual gp to come back from her holiday (or wherever she's been!) and I'll try again.

On the plus side, I'm finally beginning to feel better Keep your chins up girls. x