After 5 years of going back and forth to rheumy with joint and muscle pain, loss of hair leading to patches of baldness and a discoid looking rash called jesners lymphocytic infiltrate and extreme fatigue and being told I am ana negative after three times was really disheartening.
It took my own gp to do specialised bloods which have shown up with lupus anticoagulant and smooth muscle antibodies even though I was ana negative, he also X-ray my hands which have shown to be riddled with osteoarthritis.
My uncle who also like myself suffered from shingles as child, then we both developed paroxysmal atrial fibrillation, him at 18 and me at 24. He was initially diagnosed with lupus but that later changed to an MS diagnosis.
It’s upset me that’s it’s all taken so long and the more I read there’s no much controversy around the ana test. If hadn’t been for my own gp finally sending away specialised bloods I will have just kept test negative for ana.
Has anyone had similar experience or words of advice? I’m new to all this and don’t know where to start x
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Anothermember11
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It's my understanding that lupus anticoagulant does not equate to a diagnosis of lupus. LA shows that you may have antiphospholipid syndrome meaning that the blood clots more easily.
Hi AM11. I am always ANA negative. Had one positive borderline one some time ago. I am persistently LAC positive and look MS like as well. I was diagnosed with lupus because I meet a lot of other criteria. Low complement, cell counts, immunoglobulins, decline in kidney function. My ESR and CRP are always normal even when I’m flaring. We are all different. Most rheumatologists won’t give you a lupus diagnosis without a positive dsDNA which I find preposterous. In the end, it’s all about how you’re treated and if your provider does due diligence in improving your quality of life. Diagnosis is important for treatment options and management but even if you garnered a UCTD vs Lupus diagnosis, your first treatment would be plaquenil. However, with smooth muscle, I’d imagine that they would or have checked your liver? Have you seen a rheumatologist or hepatologist? I think the smooth muscle antibody would be more important to follow up on. Persistent lupus anticoagulant can make your blood slurry and slow flow so we get a lot of micro vascular problems. It can look like MS but it’s all peripheral instead of central (like a stroke). The atrial fibrillation could be exacerbated by something called Dysautonomia - very common for persistent aPL folks.
I think you need to find a good rheumatologist or maybe neurologist. You’ll get shuffled around but sounds like you need to find someone willing to put pieces together. Your situation seems mighty complex. Hope this helps. Sending hugs. 💜xx
Thank you so much for your reply.I was seen by rheumatology, neurology and dermatology. I was eventually discharged as came back ana negative so they never did further bloods. The only issue on my original bloods was extremely low vitamin D. I take vitamin d but didn’t stop the flares. I have appointment with rheumatologist on 29th June to discuss the recent bloods that gp sent away for and the two positive results that came back. I am aware that I have to repeat these bloods in July as need to be be repeated after 12 weeks for confirmation of LA and ASMA.. there’s also grey cloud over my skin lesion called jesners lymphocytic infiltrate, it seems a split in medical world of wether it actually belongs to lupus or it’s independent. It’s just all so confusing for my little head. Can I ask if you were diagnosed before positive ana?
Depended on who you asked. 4/5 said SLE even before borderline positive ANA. One even went as far to say SLE with APS. Once my repeat LAC was positive, most rheums said SLE. This included 2 prominent lupus specialists. I’ve only been low positive ANA once 1:40 and most would call that negative. My personal, local rheum said UCTD until my kidney function declined and never recovered. And that was some time early last year. But 4/5 called lupus a year earlier and this was without a strong positive ANA. However, my labs match otherwise, low complement, low immunoglobulins, persistent leukopenia, bouts of thrombocytopenia.
Oh my home rheum made it 5/5 for SLE last year after kidney problems but 4/5 said SLE in 2019. It’s interesting how much things vary based on rheumatology. I think my rheum thought I was Sjögrens, dermatomyositis, or MS but everything came back negative for both. My GI thought scleroderma initially. By process of elimination after having been tested for everything under the sun and then kidney issues, my rheum settled on SLE. But I look back…. Pericarditis, low cell counts, fevers, lymph nodes, fatigue, adult ADD (started adderall at age 26). I had some weird lab abnormalities like heterophile positive back then too which everyone thought was pure mono but it was likely a lupus flare. And sometimes I wonder if my flares are just uncontrolled EBV that ebb and flow in severity. So many ideas run through my mind. If only I had the energy to actuality them.
Yup. This is because they changes the original ANA test for a cheaper test that ruled out many people that were getting a positive ANA. They called a more efficient test. However private clinics still use the original one which also points to what pattern your ANA displays ie a speckled could be lupus etc ...My personal opinion this was a route to culling a lot of patients of their lists and that did actually happen with some detriment. I myself was nearly one of those until I threatened to sue and than was matched in to a Pet scan which confirmed a second diagnosis that my hidden ana from the new test could not. IF I was use I would do the same and request a csf fluid sample . Sooner you start treatment the better it will be for you and on the other hand if you are confirmed well after all that you have peace of mind. Here are the details of the Ana test change from the nhs site..the original Ana test was just done recently on me in a London hospital and still comes positive.
Antinuclear antibody (ANA)
General information
'Antinuclear antibody' refers to an old test for IgG against nuclear components, detected by
immunofluorescence. This test has been superseded by faster, more reproducible parallel tests for each of
the nuclear components, namely ENA (extractable nuclear antigens SS-A (SS-A52, SS-A60) (Ro), SS-B (La), Sm,
Sm/RNP, RNP (RNPA, RNP 68), Ribo P, Chromatin, Jo-1 and Scl-70), DNA and centromere. Antibodies to
extractable nuclear antigens are of use in the classification of clinical subsets of connective tissue diseases
and in providing prognostic information.
When you request ANA we will perform the above tests; if any are positive this will be indicated as a positive.
Thank you so much that was an interesting read and very recent update it seems. So under this test I would be ana possible? Interesting to see what rheumy says x
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