Hi, has anyone on here been diagnosed with Lupus or another autoimmune disease without having a positive ANA double strand blood test result?
My GP hasn’t referred me to rheumatology as he said my ANA blood test was positive but not massively so & the double strand test was negative?
My ANA blood test was positive in May & again same reading few weeks ago.
I have lots of physical symptoms going on & feel that they aren’t listening to me? He told me Lupus would show up as stronger results in my bloods? But I read that only 60% of Lupus sufferers test positive on the ANA double strand test?? Not sure how accurate this information is?
Any advice from people that have been diagnosed would be much appreciated thank you
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Frenchfancy
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As you say, most people with lupus/SLE have a positive ANA, and although the ds-DNA test is highly specific for lupus, it is not as sensitive as the ANA test, so a higher proportion of people with lupus have a negative dsDNA.
Last time you posted, you said your GP was seeking advice from rheumatology, so is this decision not to refer the result of that advice? Do you know what other indications were used to decline a referral? Has your GP offered another explantion for your symptoms? As you know, lupus is far from the only possible diagnosis for someone with multiple symptoms of auto-immunity plus a positive ANA, so these differential diagnoses should be considered too.
If he ran the anti-DNA test, he likely ran other what they call sub-sérologies. You may be negative on all at this point. He has to look at the whole picture. He may be doing the “watch and wait” approach. The rheumatologist would likely advise him to do the same thing. I was sent for evaluation years ago when I didn’t even know what a rheumatologist was. I was told they would be watching me. I remember thinking, “What are you watching?” But that is actual good medicine. It is often best to stay with the same GP so that he/she can see symptoms evolve. Try to be patient and report your symptoms to your doctor.
Hello frenchfancy: i agree with whisperit & kayhimm
I am one of the percentage of patients who test negative for all ANAs etc, but still fulfill enough of the required official criteria for lupus diagnosis, including sufficient blood test criteria
However, when i finally did get GP referral to a lupus-expert rheumatologist, even though all these indicated lupus...
- medical history (including blood test results like a history of consistently below range lymphocytes...a type of white blood cell deficiency or leukopenia...so, have you talked to your GP about your historic white blood cell results? Also: you could ask him/her if your Complements are low: C3 & C4...my low C3 & C4 blood results helped diagnosis)
- photos of visual manifestations
- physical examination in clinic
...my rheumy’s reports very wisely listed my diagnosis as “provisional SLE” for 18 months or so until my signs, symptoms + further tests results (blood, lung, cardiac etc) + response to first line lupus treatments etc consistently helped convincingly established my SLE diagnosis officially
As you know from your research + previous post here, it’s widely acknowledged that a fully confirmed lupus diagnosis can take years...but i hope you won’t let this put you off, cause in the meantime, if your manifestations add up, you can still qualify for referral to rheumatology and remain in care even provisionally diagnosed as having a lupus-like immune dysfunction & connective tissue disorder condition like MCTD (mixed connective tissue disorder) or another Differential Diagnosis
Maybe you’ve been there already, but here is a link to the diagnosis info page on the Lupus UK website, which helps those preparing to discuss this further with their doctors:
PS my case is unusual because we now know i was diagnosed with lupus as an infant (am now 65) but that diagnosis got lost. So, had i been tested earlier in life, i might have been ANA positive. However, we now also know i have a very early onset bone marrow disease preventing me making antibodies..so i may never have had the ability to be positive ANA anyway!
I am anti RNP positive with SLE so you are right. The symptomatology is important in the diagnosis as well. I would suggest reading the links that Coco put up as they have great information regarding diagnosis.🦋
To date all my bloods are negative. Which is highly frustrating when you have so many symptoms. Some of the bloods that are run are standard screenings. I have an appointment with a lupus specialist. Even after taking the results of my bloods, he still highly suspects lupus.
My dad is also riddled with rheumatoid arthritis, and has never produced a positive blood test for that. It would appear that some of us have DNA that will not freely reveal disease, but that does not mean we are not sufferers x
So true Lisalou..WELL SAID...l am also seronegative, but even so i still do meet enough official systemic lupus diagnostic lab test result criteria because i have enough of the right other types of blood results (see details in my reply above). Do you have a history of leukopenia in any form (neutropenia, lymphopenia etc) and a history of low complements? XOXO
I don’t think I’ve been sat in front of any doctor that has pushed for more testing. They do what they know and then that comes back ok and then they can’t help me. I’ve literally been everywhere, I’ve had a full allergy screening during flares and no allergy is detected. I guess I thought at one point maybe it was a bad allergy .
Still I am off to guys on Tuesday for photosensitive testing and got an appointment in December with the Lupus specialist (finally) x
So my GP has heard back from Rheumatology & they have given me an apt mid December at a local hospital, what should I expect from my first appointment? Will they want to do more blood tests? I asked GP if they’ll have all my notes as I’ve had lots of random problems for the last 8 years! But she said no, but they’ll have your blood results??!
I have no antibodies. One consultant at a leading Lupus centre told me that I probably do have some antibodies to something but they haven't yet been discovered
He also said that the immune system and disorders within it are immense. Factor in a few overlaps and you have a very complicated puzzle!
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