I have been very ill for the last three years. It started during a stressful period in my life and since then has progressed.
It first started with aching joints and fatigue, this then progressed to painful joints a face rash and hair loss. When I went to the GP he was convinced it was lupus. Ran tests which came back with negative ANA but positive dsDNA and raised inflammatory markers. He referred me to the rheumatologist who saw me said I looked fine and it wasn't conclusive in the bloods, diagnosed me with fibromyalgia told me it was stress and I should just cry it out and get over it! I was discharged and took that as just get used to it.
2 years later and I am really suffering. I have had my bloods tested which have shown constant raised white cells and same before raised inflammatory markers and negative ANA. I have been referred to a different rheumatologist but wondered if there is any point as they won't give me a diagnosis with negative ANA.
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A negative ANA does not necessarily mean that you don't have lupus. Did they re-test your dsDNA? This test is highly specific to lupus and a strongly positive result is good evidence for a lupus diagnosis. If you don't have sufficient clinical markers to confirm a lupus diagnosis, you may be diagnosed with a 'lupus-like' disease or undifferentiated connective tissue disease (UCTD) which is generally treated the same.
If you need more information about lupus and how it is diagnosed, you can request or download one of our free packs at lupusuk.org.uk/request-info...
Good luck with the new rheumatologist. Let us know how you get on.
Sorry for your terrible, demeaning doctor experience. I tested positive, and then negative. My rheumatologist (75 years old. Maybe time to retire, or keep up to date with current information about the disease) told me I was fine. I didn't want meds, and he gave me," well what you want me to do?" I guess I just needed confirmation that I wasn't crazy. Decided from that day on to never see a doctor again in the so called general population of physicians.
I work with a functional medicine doctor. Find treatment much better, and he is kinder person. Plus his wife is a nurse, and has great advice too.
Good luck with your new rheumy, but you are not crazy nor a hypochondriac.
Paul gives good advice about bloodwork showing negative.
I am a text book case of lupus but I'm ANA negative. I've had every symptom except a miscarriage but I've never been pregnant. Blood work isn't everything. I suggest that you take pictures of any rashes that you get and take them to your next consult. As soon as I showed my rheumatologist the pictures of my malar rash she was convinced. Good luck.
Yes. Got it in black and white several times over. ANA negative SLE. In fact I've been told by my GP and consultant that it's one of the more aggressive cases that they've seen and are reallystruggling to get it under control. Just because it's ANA negative doesn't mean it's any less serious than ANA positive. It took me a while to get my head around that until I asked my specialist nurseif ANA neg was like a "pretend lupus" she laughed her head off and said No, it's just as serious but can be harder to treat and diagnose. But my team are fabulous! I'm very lucky!
Did it take some convincing the rheumatologist to go with it? I have such severe symptoms spanning 10 years and have 5 or 6 of the criteria just without bloods. I'm at that exasperated stage where I need answers and help but am nervous hearing other peoples experiences that I wont be taken seriously.
Nope, I am a medical person and presented myself as if I was handing over a patient. I gave her a run down of everything since birth including my 15 hospital admissions in 30 years, abnormal bloods, symptoms etc. Before she even examined me she agreed on the diagnosis. Saying all of this I was left acutely unwell for well over a year by another health "professional" a term I use lightly with him. It was me who initiated the rheumatologist input as I was told it had been "anxiety" or a "virus" for years.
I had to really push to see the rheumatologist but once I had pericarditis, POTS, malar rash, raised ESR, low WBC and horrific joint pain they couldn't really argue with my idea that lupus needed to be excluded. The rheumatologist has never questioned my lupus diagnosis, in fact she said she was sorry for what I had gone through before seeing her.
I too was really nervous about being dismissed but have faith, there are some good people out there.
Thank you. Yes I'm medical too and was debating just giving a list of PMH episodes to whoever it is I see. It's that typical dismissal from some people you get that it so difficult.
I have positive ANA but negative dsDNA but i do have a red rash on my face. I have asked my doctor about it and she said that the positive ANA result was quite low but she did agree about the face rash looking like a malar rash. So far no referral for me to a rheumi but i would have thought with your positive dsDNA that this was a strong indicator. Hopefully the Rheumi you see this time will be much more clued up and not just rely upon having a positive ANA which is not the be all and end all in diagnosis i have read.
I'm interested to know more people who have ANA negative but lupus diagnosis? I'm ANA negative but again textbook lupus with operations for joint problems and rashes etc the works. I see a rheum next week but am nervous that they'll look at my bloods more than my clinic history?
I believe a lot depends on whereabouts in the UK or world you are. I saw a rheumatologist last year who told me in January that it isn't possible to have a connective tissue disease with negative autoantibodies anywhere in Scotland, where I live.
And others here have found this to be true - i.e that it isn't possible to get a diagnoses without any immunology showing positive. But then you do have a positive dsDNA and, alongside your symptoms, I think this should really count towards a diagnosis of Lupus because it's so specific.
My ANA changed from negative to clear positive once I was off medications and steroids and this led to a lip biopsy and rediagnosis of seronegative primary Sjogrens - previously diagnosed with RA. Autoantibodies can fluctuate as I know very well, so hopefully they will test you again. But I agree about taking good photos of rashes and swollen joints etc with you. Also avoid taking any medications prior to your appointment,especially nsaids and steroids.
2 years ago I had a positive ana was referred to lupus clinic started on hydroxy, but it is now negative. All my bloods are now normal except feratin which is slightly high.
My rheumy has gone from almost being excited to now saying I don't have it because of my bloods. I have uctd on paper as diagnosis.
My gripe is that I have many text book symptoms of lupus but because my bloods don't tally at one point he even asked if I wanted to stop hydroxy! Fortunately my husband was with my and said that since taking hydroxy I'd gone from being a 44 year old (previously healthy and fit) woman needing a walking stick to not needing one again! So I was left on it.
He referred me to another hospital to see a professor hawkins for investigation into an auto inflammatory disease and he (the prof) said I am text book lupus and is very much in the sero neg camp. He wrote as much in his letter!
I'll be following this thread with interest because of my experience. I've aalways said that surely symptoms should matter?
These are my main symptoms:-
(in my rheumatologist's words) "severely" photosensitive
Hi Sooo tired, my rheumatologist said once you have the positive blood tests positive ANA and Autoantibodies and meet the criteria for diagnosis you don't need the blood tests repeated ever. He does do blood counts, metabolic profiles and urine tests to watch my organs. He says all treatment should be based on symptomatology. He said he has seen pts who have been treated for years and then change rheumatologists due to moving or retirement and then the new Rheumy says the person doesn't have it and stops their Meds with dire consequences. I guess a different school of thought. I just know I see a lot of frustration on this blog of people who have been diagnosed by one Rheumy only to be told by another that they are fine, when they know they are not fine. I hope you get to the bottom of all this. I am so glad the doctor kept you on the hydroxy. I know for me it has been the biggest help to control joint pain and muscle weakness. Hugs, Nan
Where's your rheumatologist based? I'm in east anglia and looking for a good heumatologist in Cambridge who looks at you as a person not just your bloods??
Paul is right: I'm getting great care at addenbrookes in cambridge. I think all the consultants there in Rheumatology & immunology are great. I attend several other clinics too, all of which have helped me. But so far not haematology. Rheumatology's Lupus & Vasculitis clinic is especially wonderful
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