LUPUS UK
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Blood results

Hi all, I've been poorly, for around 4 years now, seen lots of different specialists, had loads different tests etc & last week I had my bloods done again & they found I have a positive ANA, SSA & Smooth Muscle, but when I'm tested for Lupus, it's inconclusive, this will be my 2 test, now need testing in 3 months. The consultation says Sjogren'sSyndrome, but suspects Lupus.

Anyone else had this issue?

Thanks

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Sjögren’s and Lupus are very overlapping in symptoms and are equally serious conditions. If your anti dsDNA is negative but SSA is positive then Sjögren’s is more likely.

I was initially diagnosed with RA 7 years ago. My rheumatogist suspected I had Lupus after a few years but my blood work was negative. Then, five years later, my ANA showed positive and I had a lip biopsy which confirmed Sjögren’s. Now I’m suspected of having small vessel, CNS Vasculitis as well. It’s often extremely complicated but at least you’re being taken seriously by the sound of things - that’s the main thing.

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Hi thank for your reply!

I wonder why it takes so long to show in bloods? so buzzer! It has been a total nightmare, I remember my first symptom in 2014, I had hives, from head to toe, I had them for 9 months, the only time I was taken seriously was when my throat started to swollen up.

The next thing happened was 2 TIAs & found is damaged my spine in 6 places, which I was so unlucky to damage my spinal cord.

Then I just started to get worse & worse, dry eyes, mouth, joint & muscle pain, swelling in the joints, headaches, sensitively to light, my balance is off too, vertigo, skin problems, ooh the list can go on...

Its awful when you need to fight your corner, not being taken seriously, doctors looking at you, like you have 2 heads or something.

I'm finally being referred to a Rheumatologist, But I've been under Neurological care for 3 years because of symptoms and due to the spinal issues.

I'm worrying now, if Sjogren's Syndrome/Lupus was the cause of the spinal issue, I have stenosis and spondylosis.

Thanks

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Well this all sounds very Sjögren’s to me including the stenosis - and especially if you have dry eyes too. I have had very bad hives and anaphylaxis 3 times over a lifetime and am Hypothyroid. Not got stenosis or spondylitis or spinal problems at all but have white matter on brain, small fibre neuropathy and ataxia - mine affects every part to some degree or other. Having a renal ultrasound next week as Sjogrens seems to be affecting my kidneys now. It’s a rollercoaster with all these diseases but some have mild versions and a lot of the information around Sjogrens is very misleading and understated. I think this is changing now though. Certainly my rheumatologists seem to be quite concerned by it anyway.

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2 TIA's, look up Hughes Syndrome/Antiphospholipid syndrome

healthunlocked.com/hughes-s...

The GHIC Website:. healthunlocked.com/api/redi...

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Hi Angellealea1

I have many symptoms like yours.

I am diagnosed Sjogrens, ?lupus, autoimmune hypothyroidism, and recently had fibromyalgia added to list.

I also suffered full body rash; had chemical testing, showing now severely allergic to metals, cobalt, and nickel.

I was taken to hospital ?stroke CT was ok. However, I do have stenosis and have had prolapse discs and sciatica twice. Thus, I really empathise with you.

Since I became a member of BSSA British Sjogrens Syndrome Association, and HU, I have been able to manage symptoms better, and understand a lot more.

I no longer feel isolated or confused. Belonging to groups of knowledgeable friends with similar experiences really does help.

I also read and research around the disease and now do understand that it is no point me getting frustrated over labels. It really is difficult to distinguish between autoimmune disease sometimes. I agree with Twitchytoes, autoimmune disease often overlap.

I was treated with hydroxychloriquine, which treats both sjogrens and lupus anyway, sadly, the med didn't suit me. After developing low WBC and low Neutrophils, I changed to gluten free diet and pace myself.

Listen to your body. It often knows what you need, and what you don't. If you can't tolerate something, it will surely let you know.

I'm wishing you all the very best. Take good care of you.

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Hi Angellealea, I have had similar inconclusive testing that seemed to go on for ever!! I have a positive ANCA antibodies test but negative MPO & PR3 tests, the three positive together I am told gives a diagnosis of lupus/vasculitis, I don't have lupus or vasculitis but my symptoms mirror lupus exactly! My diagnosis is autoimmune rheumatic disease unspecified!!

I have learned that these type illnesses are usually incredibly complicated and individual involving a long testing process of elimination by your Consultant/s. They will get there in time with your testing so hang on in there. I understand it is very frustrating when tests are inconclusive and take a long time whilst we are feeling so unwell when all we want is a diagnosis and some positive help. Good luck

x

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Thank you all for being so lovely & supported, at times I feel like I'm going out of my mind, I know it sounds silly, but it's nice to talk to people who understand.. x

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Hi Angellealea1,

Sorry I'm a little behind the times. Just chiming in here after reading your post this morning. It is all very overwhelming, isn't it. You're fine and then suddenly something is wrong and you know it, but instead of a straightforward test and answer, you have to fight to be believed, then it goes this way and that from one department to another and back again and not everyone is on the same page and you have to explain everything to every consultant every time. Hopefully this site will help you see that we are all virtually in the same boat and though I've not been in this particular autoimmune disease boat very long, I'm getting the hang of how to navigate a little better now.

I also started out with hives all over. They lasted just about a year and I couldn't get anyone to listen to me that this was not contact dermatitis, particularly since I'd never had skin issues before. Weird and fiercely itchy blisters on my hands were put down to eczema, which I'd also never had before. No antihistamine worked. It didn't help that my regular GP was on 6 month leave. It was only when she returned and I told her my toes were now twinkling and buzzing and that being in the sun was becoming torture, that I got a referral to Neurology and an antibody test. I too ended up with ANA positive and SSA anti Ro.

The Neurologist instantly suspected SLE or Vasculitis or something equally autoimmune. He said this is almost always the case when it starts on the skin. And that unfortunately nerves can sometimes get involved in the whole mess because the connective tissues overlap. So then I was sent down the Rheumatology route. My symptoms got more and more bizarre and would keep coming and going so that I was second guessing myself. I'm now on Hydroxychloroquine, like most of the rest of us and it is shutting down my reactions (rashes) quicker and has done away with the suddenly swollen and painful joints in my fingers. I'm to try an immunosuppressant after my Rheum appt next week. I'm nervous about that.

You have been very unlucky indeed to have spinal cord damage and strokes. That's awful! And for Twitchytoes to get CNS and kidney issues now too...ugg. And Lin007 without conclusive diagnosis, so frustrating. We must be in the years of being the guinea pigs for eventual proper/quicker diagnosis and treatment. There is a lot even the consultants don't know. Like has also happened to many here, just from reading posts, I seem to have got past the need for exact diagnosis so long as there is treatment and monitoring. Diagnoses seem to morph anyway, as Twitchytoes has experienced.

Could you tell me how they found your Smooth Muscle? What was the test to discover that? I've just read a little bit about it and see it could be an answer for me, judging by the ares of the body it seems to affect. I'd never heard of it before.

Wishing you all the best through all of this. It's A LOT to manage.... Sorry you're in the boat too. : (

Panda

x

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Thank you so much for your message, sorry only just getting back to you, it's been a little hectic at home 🙈

I feel so blessed, to be able to talk to people who understand me, it's been a difficult few years.

With this illness, I just felt like something was eating anyway at me, I think the consultants, thought I was going mad, but I knew there was something was wrong, I'm quite good with self-awareness.

How do you feel about the diagnostic? Are the meds working OK?

The Smooth Muscle test, was done via a blood test, I'd never heard of this myself, but I think there is a link?

Thank you for your lovely message.

Angel x

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Angel,

I sure understand what a god-send this site is, just for having some eye-opening moments of: "Hey! That's what's happening to me!" and "Hey! That's exactly how I feel after a consultation!" Usually just wanting to curl up... It helps to know that though you might be the only one in your life going through this, you're not the only one on this similar path.

Thanks for info on the Smooth Muscle test. And all the best through the hectic home stuff too. : )

Panda

x

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