Hello all! I have been having all sorts of symptoms and illnesses the past 18 months. Started with severe Erythema Nodosum, which lasted 3 months and was so so painful, stopped me from walking and working, as a 27 year old it was terrifying! (/at any age it would be_ )
I have since them been for all sorts of tests, and keep having months of being ok then a ‘flare’ consisting of swollen knees, hives, painful sharp joints/muscle pain and serious fatigue.
With the ANA test having come back negative twice, I’m getting concerned that I wont ever have any answers? Has this happened to anyone else?
Thanks in advance and thank you for all being so open! X
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cdow
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I didn’t even know this... I shall research into this. I am under a rhuemy now who seems good at the Kedgeree centre in Manchester royal infirmary.
But it does seem the focus each time is the ANA test and when that comes back negative (even with elevated CRP and ESR results) they are still not able to understand what’s going on.
Thank you for the link! Shall have a good read through that
Yes last year they thought it could be Chron’s as I kept loosing weight with the joint swelling and stomach pain, had a colon + endoscopy and all came back clear which was great! But not with a diagnosis.
They then thought maybe Rhuemotoid artritis, did a ultra sound on my effected joints but no damage has been caused so they have drawn a line through that too.
Lastest mention has been Lupus, I am meeting my new Rheumy in November who is going to look further into this for me, but the last time I went I had bloods and my ANA was negative so they seem to be puzzled.
Oh wow! Thank you so much for all this info, wish you were my Rheumy! Haha.
Me too, fingers crossed. I am getting more confident in believing in my symptoms and putting my foot down when they are dismissing me. I think because I’m young, look ‘fit + healthy’ as they all seem to say, and have a positive outlook they think I’m not suffering... Even when I show them photos of my swollen joints etc, eek!
That sounds frustrating to have been so sick and still no answers. My one thought is that with your obvious signs of inflammation in joints and rash, you will be followed closely. Many of us were ANA negative for several years. There are other tests that can help point the doctors in the right direction. Do note any new symptom. Record your temperature.
Oh it is so frustrating... I feel as though I have my life on hold, I’ve had to adjust my life a lot to accommodate the way my body now works. I can’t go out with friends drinking/partying anymore, work long hours or exercise once as much as I enjoyed.
It has brought a lot of insight too into what really matters and these things quite trivial, but it’s hard to take it all on board when I don’t have a diagnosis yet, feels like I’m in limbo!
Great to have insight through this forum, and your reply too on the negative ANA for several years... I didn’t know what could happen! That makes me feel much less alone. Thank you!
KayHimm Sorry to break into this thread . May I ask the significance of the temperature? I’m learning to. I have friends with Lupus who have suggested my flares might be that but I don’t know, had a couple of tests that were negative. I’m convinced Sjogrens could be part of my problem. But nothing found in bloods. I have HypoT, reckon had that most of my life if not all, but took till I was nearly 30 to get diagnosed. I had antibodies back in 1981/2 but no idea what, assumed Thyroid related but no way of knowing, and can’t find that I had positive antibodies since. Have mild OA which I’m sure will now be blamed for future issues!
Body temperature generally low 36’s. Dropped much lower some years ago when at my worst, with thyroid and adrenals. But even when reasonably ok on thyroid meds never gets much above 36.2. And occasional have flare up of something that knocks me sideways and sends everything askew.
In the proposed new lupus classification fever is one of the criteria. Researchers found that fever can separate lupus from mimickers. Many of us had fevers of unclear original when being diagnosed.
Yes Thank you. So with Lupus it would he more of a rise than fall. I wonder if someone has a low temp for reasons of a UAT or other, but still had Lupus if temp could rise but as not rising above 'normal' level the raised temp would not be picked up?
Oh wow! I thought about this, is it just because I’m not in a big flare up when I eventually get my appts.... I have a themometer now to check my temp when I cant get into the docs and its always sky high when my joints are swollen.
I’m sorry to hear your condition has gotten worse, I hope you are getting the right care and treatment and can take it easy where possible.
I have had normal ANA, equivocal ANA and weak and strong ANA readings over the years. It fluctuates but is now always positive. I share the gastric symptoms, swelling, occasional hives, joint pain and stiffness etc. However I have Sjögren’s with overlapping CTD . It’s not positive in my blood but it was very positive in my lip biopsy.
Around 25 - 30% of Sjögren’s sufferers are seronegative - which is a much higher percentage than Lupus. Although the most common symptoms are dry eyes and mouth, it’s a systemic autoimmune disease and can start in the GI system, joints, nerves or anywhere else.
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