Has anyonelse had ana positive, dna positive, then equivocal and now negative????????

[beckybooboo]

Is it me or does this really happen? Been rheumy today to see the nurse and been told that my bloods are negative yet been positive before, Im so confussed my crp is normal, esr normal but yet in in sooooo much pain with my joints?????

Why does this happen? Anybody know???? Im under my local hospital but am now seriously considering a self referal to St Thomas Lupus Centre.

Any thoughts? Please help me this is making me feel so depressed xx

[mstr]

Hi Becky, well my understanding is that if you have had the positive ana's at sufficient levels and the symptoms then you have an autoimmune condition occurring. With the CRP/ESR this tends to raise in a flare up or if the disease is more active. Mine recently rose during a flare up but two weeks later was back to normal. This does not been you do not have an autoimmune condition. You are right that at other times my joints can be sore but not show in blood results.

[MandieR]

Damn this bloody Lupus!!!! it confuses us all so much of the time, I personally feel that if it were straight forward then we would all be able to deal with it so much easier, but then again maybe we are all very special people in order to deal with this in the forst place lol.

I have had negative results, positive results, false negatives etc etc

With regard to St Thomas's then I would highly recommend self referral. I have been going for a few months now and am dealt with entirely differently than anywhere else I have been.

Good lucki and keep us all posted

[field in reply to MandieR]

Can you self refer to St Thomas' hospital, or do you have to be refered by your doctor?

[Purpletop]

I had ana positive, then negative, then positive again. It isn't an indication of disease activity apparently, only of the presence of autoimmune disease. My esr is 25 all the time for some reason and despite that I'm sometimes ok, sometimes not ok.

Blood tests are not an accurate indication of disease activity until the disease is really active. Until then I'm told that lupus is active but not doing major damage, hence symptoms but not appearing in the blood tests.

But then it also depends on the labs doing the blood tests. The tests I did at London bridge clinic were far more granular than the normal ones I have done locally, which meant many of my readings were just off their limits, although the specialist wasn't concerned.

It is good to get a second opinion anyway, for peace of mind, but don't think you're imagining your symptoms, it is the way this illness works.

[beckybooboo]

Thank you all for your feed back, it really is very helpful and encouraging when others too have had same type of symptons - thanks purpletop im def going to self refer, I go back to see consultant at my local hosp next weds but in the interim im going to refer myself.

Your help, comments and advice are really appreciated, I know that there is something wrong with me I just have to remain focussed but its so very hard to do when this illness continues to chip away at your ever decreasing energy to fight!!!

ONWARDS AND UPWARDS TO US ALL, xxx

[grannyjogger]

I was wondering what the process is for self referral that some of you have mentioned because I thought you had to be referred by a GP. I was referred by my GP last year (possible RA but other symptoms including a malar rash). I had an excellent rheumie at Ipswich Hospital who arranged loads of tests (MRI, ultrasound, x-rays and so on), he also talked about referrals to an eye specialist as well as further investigations into my lungs/breathing problems. He started me on hydroxy after my third appointment and I felt reassured that he was piecing the evidence together. Unfortunately 2 appointments later he had left and I had a new rheumie who dismissed everything, said it was probably RA (later the rheumie nurse specialist confirmed that a diagnosis of UAD not RA was recorded in my notes). I've not had any blood tests since the original rheumie left. I am dealing OK with my symptoms but I have no confidence in this new rheumie, her attitude sucks and she is rude and dismissive. One of the messages that you lovely people on this site often stress is to get things checked out - for me that will be like beating my head against a brick wall with my current rheumie. A bit more info about self referral would be much appreciated. Thanks :o)

[beckybooboo]

Hi grannyjogger, Im going to look into it through the use of the net and see what I need to do, will post you when I get some info and let you know x