hi, I finally thought I’d get some answers & more importantly help!
private rheumy was pretty sure it ‘all pointed towards lupus’
Could only afford initial consultation, GP referred me on nhs due to ongoing symptoms.
I currently have: fatigue. Muscle spasms & aches, rash on face that comes & goes, mouth ulcers, Small ( 50p size) alopecia patch on front hairline that hasn’t grown back in 18 mths? Stiffness, poor memory, swollen right knuckle ( ultrasound showed effusion but no inflammation so they have said looks like early osteoarthritis?) I’m 40
Lower back pain ( again MRI showed no inflammation, but showed Bertolotti’s syndrome? So they said it doesn’t usually cause pain? But likely it’s that causing my symptoms)
My hand is so swollen I struggle to use it some days?
But my bloods are too normal apparently so I’m being discharged!
ENA all normal ,
Ana positive however at 1:320 homogeneous
Low vit D & low magnesium
Surely my positive ANA is a factor?
The nhs rheumatologist keeps saying it’s a red herring, 3% of the healthy population have a reading that level.... my argument I’m far from healthy!?!! The swelling in my fingers/ knuckles is very obvious yet even the GP was shocked that my ESR bloods came back at 2!
he said you have a visible swelling so I can’t understand how your bloods aren’t reacting?
Help?! I’m worried if I get discharged that I will then be waiting years again if any other wonderful symptoms start & I need re-referring?
Can ENA blood results be negative & ANA positive or if it was an autoimmune disease can the ENA blood screens fluctuate?
Thanks everyone x
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Frenchfancy
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Yes it’s quite possible for bloodwork to come back negative apart from +ANA - and still have something going on. Some don’t show inflammation in blood although many more do. ENA can take years to show positive as things evolve and become more established - or sometimes fizzle out preferably. Some people’s bloodwork never shows positive but their inflammation shows up on ultrasound or other imaging but unfortunately that’s the most definitive way of diagnosing inflammatory arthritis usually ie inflammation and then, when erosive damage has occurred.
I suspect many NHS rheumatologists would diagnose early onset osteoarthritis and Fibromyalgia and discharge you at this stage when nothing has shown apart from a clear positive ANA. Do you have any skin rashes, Raynaud’s or dry eyes, nose or mouth? I think about 25-30% of people with rheumatoid arthritis, Sjögren’s syndrome and all with psoriatic and ankylosing spondyloarthritis are seronegative but Sjögren’s people usually have +ANA like yours so maybe worth looking this up and asking optician to run dry eye test.
Otherwise, I think my focus in your shoes, would be on getting vitamin D deficiency and magnesium sorted out as thee alone can cause many, if not all, of your symptoms, very much including depression and anxiety. I found my inflammatory arthritis completely relieved when I was prescribed vitamin D with calcium.
It turns out I have early stage osteoporosis now but I’m +20 on you and probably have this from early menopause and steroids. Although osteopenia and osteoporosis doesn’t officially cause pain - all my friends who have this find that it actually does.
I know it takes forever and a day to get re-referred, but if your GP is on side as it sounds, then they can always re-check you every 4-6 months, including full thyroid panel, Vit D and magnesium and refer again urgently if and when things progress.
My main concern, with a very positive ANA, is that you are monitored closely by your GP. It is all very well a rheumatologist dismissing this as present in 3% of healthy people - but a) you have autoimmune symptoms and b) 3% is still a small percentage and, with the titre being clear positive, something is clearly going on. But this particular rheumatologist is probably not the right one to determine what if their can’t keep you on their clinic list for “wait and see”. Good rheumatologists who keep patients like you on their books are a rarity in my experience but they exist. Be sure to get a copy of their letter and I really hope the vitamin D and magnesium will make a big difference as they did for me. It took an endocrinologist I saw once privately to kick start my treatment and care.
Thank you very much. Yes I have raynaurds also & abnormal ECG findings/ chest pain with no clear cause? And kidney stone? Again it could all be coincidental & I don’t know which things if any are connected!However I do strongly feel that there is some sort of autoimmune response going on? I just don’t know what!
My original rheumatologist was keen to start me on hydroxy but the NHS one now disagrees
So I will just keep checking in with GP as we go I expect?
Just checking - the rheumatologist did say they were discharging you back to GP rather than taking a wait-and-see approach? Also have you had your full thyroid panel run? My immediate advice would be to make sure you get a copy of their letter and make another GP appointment to discuss your concerns and treatments with your GP.
Re coincidences - could be - but I’m not a great believer in these myself.
Oh if you could go back to the one that wanted to prescribe hydroxy, i would do that. If you start feeling any better in a couple of months on hydroxy, it would be an indication of an autoimmune process too.
Sorry to butt in oldted but you sound v knowledgable ! My magnesium bloods always below . I take supplement and spray . Should i take a higher dose supplement? Thanks ever so and apologies for butting in
Blood tests for lupus can be very confusing – for patients and doctors alike. Unfortunately, there is no one blood test which categorically confirms a lupus diagnosis.
I attach below our publication which discusses the various symptoms of and blood tests for lupus, as well as a link to our blog article regarding getting the most from medical appointments. This article should help you prepare in advance of your next appointment, to help you get your points across – it also contains information in relation to how to go about getting a second opinion from the NHS, should you feel this is necessary. There is also the option, if you feel you are not receiving proper care, to speak to the NHS PALS service to raise your concerns.
Thank you, has the criteria changed recently for Anti dsdna or do the results vary by county/ area?My neighbour has lupus & he asked how I was getting on with my hand etc & I told him my double strand was negative as only 13 & he said that’s a positive result?
But I’m sure they said anything under 30 is negative? So I thought it was unequivocally low!?! 🤷🏼♀️
We cannot comment on specific blood results, as the parameters of a positive or negative result can vary, depending on the lab which is used. All blood results should show what your result is, with the parameters for a normal result for that lab (usually in brackets) alongside your reading.
As other members have mentioned, if your rheumatologist discharges you back to your GP, make an appointment with them to go over your concerns. Read through the blog article I provided a link to above and go into that appointment with a clear idea of what you want to discuss and what you want to happen next. If you are still concerned, then perhaps the time has come to request a second opinion - also covered in the blog article.
Hi , ANA tests for the presence or absence of autoantibodies, while the ENA panel evaluates which proteins in the cell nucleus the autoantibodies recognize. The ENA panel helps diagnosis, distinguish between, and monitor the progression of autoimmune diseases ........ I hope this helps you a bit. I tested positive for SLE, in 2008 , and then had to find a new GP in 2018 because mine was retiring. My new GP, is nothing like my old one. This new GP sent me for labs for my SLE, and despite all my SLE symptoms, all health reports and files from my old GP of 12 years, my ANA came back, Seronegative! For the first time... He dismissed me, and I had to find my own new Rheumy. So, frustrating, and ongoing. Even across the pond here, healthcare is a very slippery cheeky monkey. I wish you well, and the best on your journey. Just never give up. Withstand the storm, be strong.Never give in, never give up. All my blessings,. The stormy sunshine.
Maybe do a full ANA panel to identify which specific autoimmune antibody you have. This will help w diagnosis. There are many autoimmune diseases with symptoms like your and knowing which antibody is positive diferenciates them.
I'm so sorry this is happening to you. About 8 years ago I had a similar situation. Went to the docs with ridiculously painful feet I thought must be RA given hand involvement too. White cell count was so low it was nearly non existent - I was told not to leave the house. Emergency referral to hospital to haematology. Next set of bloods came back a bit more near normal. Despite them saying I must have 'a very serious autoimmune disease' I was never referred on and left for 7 more years before skin symptoms flared up so severely I ended up at dermatology and it was then another year before they discovered my DS-DNAantibodies. I would push hard not to be discharged, explain that you belong to this group and you hear this from other people who are left without treatment. Maybe ask to be monitored for a year with regular bloods to see what pattern emerges? my best x
Thought I'd tell u my story coz this is not unusual unfortunately 😔I had shingles in 2009 which I didn't get treated..following this I had problems with the soles of my feet..skin breaking down. I went to the doctor's in 2013 n they prescribed Flucloxacillin maximum dose as my feet were infected. They didn't improve n I went back to the doctor who prescribed Fluclox again for another two weeks..maximum dose. During that second course of fluclox I broke out in an all over body rash that resulted in me attending AnE. The consultant in the casualty dept thought that I had Steven Johnson's syndrome..a rare allergy to antibiotics. I was admitted n referred to dermatology..they took a biopsy n concluded that I was allergic to Flucloxacillin. I was treated with steroids both orally n topically which cleared the rash n I was discharged.
My feet were still problematic however n in 2016 I presented at the doctor's surgery with ulceration on the soles of both feet..palms of my hands too. I was having awful PV bleeding when I should have been stopping my periods( turns out i had fibroids) I was depressed and anxious. My lovely GP referred me to dermatology again n gynae for the problems there.
So once again I'm in the dermatologist office..my dermy consultant isn't the one who found lupus funnily enough. I had an appt there to get my feet dressed and the nurse bought in a registrar to check my feet for infection. He examined me thoroughly n said that a rash I had on my chest was possible scabies!! He sent me for extensive blood tests n he questioned Lupus amongst many others.
In February of 2017 I was diagnosed with Subacute Cutaneous Lupus (SCLE) n started on Hydroxy.
So as you can see this road is a rocky one. That original admission to hospital I wasn't even tested for lupus..that happened much later.
I would strongly suggest that u keep a symptom diary..note everything even if u think it's irrelevant..what's the weather like..what you've eaten..how u feel generally..all symptoms. Take photos of any rashes or swellings. It helps to make the most out of appts with doctors. Before an appt I go through my symptom diary n then I make notes of questions that I would like to ask. We don't get appts that often n we tend to forget things that happened months ago so the diary is an invaluable tool.
Most of all do not give up!! I agree with others ask your doctor's to keep an eye on u..you clearly have symptoms that are hard to pin down n I can relate. We believe you..we are with you..you're not alone!! 💜🌈😽😽Xx
I have negative bloods except dsdna which is now normal at the moment due to hydroxychloroquine. I was diagnosed by symptoms which I think some Rheumatologists don't even see. Negative blood and they think no autoimmune which is nuts. I have kidney stones and the Rheumatologist says there has been some link between stone formation and Sjogrens. Where do you live? there may be someone on here that can recommend a Rheumy near you?
Unfortunately there are so many doctors in the UK who dont understand the impact that all these symptoms have on our lives and only go in the blood panels rather than the symptoms.
I have had four positive ANA tests - numerous hospitalisation where I've had very raised WBC - very raised CRP- Low C4 - Low mannon Binding Ligand Levels- Low neutrophil count. Low Vit D-Mallor rash Extensive body rashes. Reynauds. P.O.Ts. Swollen Knees- Optic neuritis, Ulcers upstairs and downstairs and the list goes on ...BUT... because I didnt have Anti ds DNA etc only positive ANA and mild ANCA , apperently I dont have Lupus.....so frustrating!! and in my humble opinion wrong.
If you know somthing isn't right, then it probably isnt, dont give up and keep badgering your G.P. eventually I'm sure we will both get there.
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Rheumatology appointment - not sure what to expect
How long for ANA/ENA results?
Can anybody relate? How long did it take to be diagnosed?
Does this sound like Lupus?
