Comfort? :/ Ana positive then negative..

[Whelp529]

Hi everyone, my Gp had ordered some blood test including Ana which came back positive. So she referred me to a Rheumy, I seen my Rheumy yesterday and got my blood results back today from what I can read online from the results is that my Ana is now negative? I don't understand she did other test like C4 C3 and all are normal. But all my symthoms are all "Lupus" joint pain, muscle pain, headache, extreme fatigue, RS, etc. is it possible to have Lupus with normal results. I've been feeling ill for 8 months now and they can't figure out why. I've been thru CTs, X-rays, Echo, tons of blood work and the only thing that came back was a low functioning gallbladder, but was told that wouldn't cause the symthoms I am feeling. I wasn't hoping for Lupus, I wouldn't ever do that but I guess I was just hoping finally to know what the problem was and have so relief. Now I'm back to square one and again not knowing why I feel like I have the flu everyday ): 

[Hidden]

Exactly the same has happened to me, but I hadn't been sent to a they my yet. I'm going to see what hospital says tomorrow. I like you was desperate for an answer, and the negative result this time threw me.

[Paul_Howard Partner LUPUS UK]

Hi Whelp529,

Unfortunately there are quite a few people who experience fluctuating or negative blood test results whilst having lupus symptoms. In rare cases this could be a case of seronegative lupus, which means you have lupus but it doesn't show in the blood. In many cases this may be diagnosed as undifferentiated connective tissue disease (UCTD). This is where you have some symptoms and possibly some clinical markers of connective tissue diseases like lupus or rheumatoid arthritis, but you don't have enough for a definitive diagnosis. Some people with UCTD may never go on to develop more symptoms or clinical markers, whilst others may in time have their diagnosis changed. In either case, UCTD is often treated the same way as lupus.

If you would like more information about lupus and how it is diagnosed, we have a free pack which you can request or download from our website at lupusuk.org.uk/request-info...

[Hidden in reply to Paul_Howard]

Just to respond to this information Paul - some rheumatologists (mine) won't even acknowledge that seronegative Lupus exists. Even a diagnosis of UCTD requires a positive ANA I was told by him. 

I was diagnosed with RA after a positive Rheumatoid Factor and clear synovial joint swelling in hands and wrists in 2011. 

But my RA synovitis went away after a few years and ever since then all my autoantibodies have been negative and I have had no further diagnosis or treatments. It's a form of torture to know something is wrong but not to be able to give it a name that feels right. My advice, as someone who has been going through all this uncertainty for years now, is to hang in there, research as much as you can without becoming an obsessive (like me!) and try as hard as you can to live extremely healthily regarding diet, vitamin levels (D and B12 especially) and exercise, if you don't already that is. Best of luck to you. Twitchy 

[Barnclown]

This is confusing whelp...just wish the diagnosis process could be easier on us all

Paul's reply is so helpful, there is little I can add except to suggest you may find these recent forum discussions can also help you get your head around this:

healthunlocked.com/lupusuk/...

healthunlocked.com/lupusuk/...

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