Hi! I am hoping for some personal experiences pls & advice from anyone who’s had similar experience. I have had two positive ANA blood tests but a negative double strand test which my GP said was specific for Lupus?
So when I asked if that means I definitely don’t have lupus she said no!?! - she’s writing to Rhematology for advice but I just feel like nobody is really listening to me?
I have been back & Forth to doctors approx 5 yrs now mainly with extreme fatigue ( I remember once not even being able to make my daughters bed?! & thinking this is not normal.
I have pins & needles often in hands feet & face, this was so prevelant 2 yrs ago I had MRI which was normal so neurologist said no cause?? It happens when I excersise especially in my face?
I have had speech problems where I know what I want to say but can’t quite get it out?
Memory loss & general spaceyness? Like I’m not really with it?
No temperature regulator! I’m either sweating in the night or freezing cold all day- I have Raynaud’s disease & always have large chilblains on toes all year round.
My joints don’t really hurt tho which doctor said would be main symptom? but I describe it as sometimes feeling old? Like I can’t move freely? My neck is always stiff & my knees ache if I don’t move often ( flights & Car journeys are always hard)
The latest thing is a rash. This has only started since April this year & comes & goes. It’s on both cheeks & occasionally across my nose. Again GP has seen photos of this wen it flares up.
I have no idea if I could possibly have Lupus but I know that I just generally don’t feel ‘well’
Any similar experiences or personal stories would be very welcomed thanks very much 👍
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Frenchfancy
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Hi there. Yes I have had similar bloods and similar symptoms to you. I wonder if you also have dryness ocular and oral dryness - which you may or may not be aware of? The only way I found out about my dry eyes was when I asked an optician to check and he was amazed by how low my tear film was. My mouth isn’t that dry but my nose and throat are. And I have have Sjögren’s rather than Lupus.
I think I’ve had it since I was a child and am also Hypothyroid (Hashimoto’s). But almost 8 years ago I presented for two years with classic features of RA so was diagnosed and treated accordingly.
As it happens I don’t have RA as my main rheumatic disease after all - I have seronegative Sjögren’s - which can imitate RA and Lupus well and also MS. The tingle pins and needles you are experiencing is a common feature of Sjögren’s - especially for those who are seronegative ie anti Ro negative but lip biopsy positive. Often we are referred to neurologists or gastroenterologists long before rheumatologists.
There is a much greater chance of being seronegative with Sjögren’s than Lupus and it is the most hard to diagnose so is often mistaken for ME, Fibromyalgia or Functional Neurogical Disorder (the latest term for a psychogenic Disorder).
This may or may not help you to pin point your own problems but I do hope it helps and even if you’re unaware of ocular or oral dryness this doesn’t mean you can’t have Sjögren’s.
Thgere are a range of related systemic auto-immune conditions. Twitchytoes mentions Sjogren's and baba Hughes', but there are others, including Mixed Connective Tissue Disease. They often share some symptoms in common, including Raynaud's and extreme fatigue, so it often takes a long time before it becaomes clear what is the most likely diagnosis. The dsDNA test is the best known way of specifically pinning the symptoms down to lupus - it is rarely positive in any other condition. However, up to 30% of people with lupus also test dsDNA negative, so it may be that you do meet other clinical criteria for a lupus diagnosis, or you might have another of the systemic auto-immune conditions. (Or none, of course).
It sounds like your GP is doing the right thing in seeking advice from Rheumatology, as they are the people who will have the expertise to clarify exactly what is going on for you x
You are in a very common position with autoimmune disease. Your doctor was clearly suspicious of systemic autoimmune disease because he ran the ANA. That was positive but other more specific tests are not. The immune system is complicated, and people present in highly individualized ways, particularly in the early period. Try not to get too bogged down in a specific diagnosis but ask if, after talking with the rheumatologist, they are thinking you likely have a systemic autoimmune disease that has not evolved into diagnosable form yet. That is what really makes the difference in treatment. The negative MRI does not mean your symptoms do not exist, but that they ruled out other things like MS, mini strokes, and lots of stuff that we don’t want to know about. I had similar symptoms to you and have never had anti DNA antibodies. Please message me if I can be helpful in any way.
I'm in a similar position. Been told I have fibro, but have had high positive ANAs (1:620) but negative dsDNA. I also have no temperature control - am often hot when others aren't or cold when they're fine. I also get the spaced out feeling and often can't get my words out. I know what I want to say but my brain doesn't seem to be able to find the words. I also feel old and my neck is always stiff but I do get achy too. Rheumy is trialing me on hydroxy for possible lupus or udtd or mctd, but still saying it might be fibro. I also have a positive ENA panel, but all of the anti-gens in the panel are negative. I believe, from the research I have done, this means that each anti-gen is quite high which makes the panel positive, but each individual anti-gen is not quite high enough to be positive, which makes a diagnosis even for difficult for the rheumy to pinpoint.
What I'm trying so say is that you may have an autoimmune disease of some sort, but they are difficult to diagnose and it may take your GP/rheumy a long time to decide what you have. I've spent 5 years waiting for them to come up with a firm diagnosis for me and am still waiting!
I am the opposite. I have gad 3 positive DS DNA tests but all negative ANA. So my doctor says I don't have lupus becuase I would also have to have positive ANA too. I have similar same symptoms as you except the rash. Pins and needles is more of an occasional thing. Fatigue is by far the worst. It is so frustrating.
Hi, my symptoms and bloods are the same as yours, identical. My rheumy Professor diagnosed autoimmune rheumatic disease nos stating I have all the symptoms of lupus but don’t have lupus as my blood test for that was negative! This was a year ago & is quite usual for these auto immune illnesses to be complicated, other clinicians question thus all the time but I understand it now and am being medicated the same as if I had lupus...
I hope this helps even if just knowing you & I are not alone with this wired & whacky illness 😁
Hi there. Reading your post was like reading my own. I had all the symptoms you are having and it took 5 years for me to be diagnosed with SLE. I too struggled greatly with fatigue but do have all the achey joints etc.. I had 2 positive ANA tests but no double strands. Getting diagnosed can and usually does take a long time. I am now on Hydroxy and have been for the last year and feel so much better. I still get flares now and then but symptoms are definately improved. Stick with it, hopefully they will get you on hydroxy soon. Keep smiling !
Reading this was like reading my own tests. I have all the symptoms but my ana is strongly positive while the Dsdna is 0. I have however been on hydroxyquine for more than a year now and it's actually been helping with temporary flare ups. I'm going to get a second opinion of course because this rheumy wants to start methotrexate with the hydroxyquine and i think its a bit much considering the blood tests are actually quite good.
I do hope this helps you and i hope you're better soon!
Hi Frenchfancy. I can undertand your frustration as I have the same except that I have 2 positive DNA's. I have 9 of the 11 signs of Lupus, chest pain so bad sometimes I can't bend down, anyway, I don't have the rash so my doc says I don't have Lupus. I have neuropathy also but I have to say all of this got much much worse after Harvoni. Hep C wonder drug that has caused illness in many of us. Let us know how your visit to the rheumy goes if you get to see one. If it's awful to have to wait years sometimes before a diagnosis. Did you happen to take a Hep C antiviral or other?
Welcome to the LUPUS UK HealthUnlocked Community! We offer a free information pack which you can download or request at lupusuk.org.uk/request-info...
dsDNA antibodies are specific to lupus, however, only approximately 60% of people with lupus test ‘positive’ for these antibodies.
Hopefully, the rheumatologist is able to perform further tests or at least provide answers for your symptoms. On average, it takes around 6.4 years to receive a diagnosis of lupus in the UK.
Fatigue is one of the most common symptoms of lupus; it affects around 90% of lupus patients. We published an article on our blog about 'managing fatigue' which contains helpful tips and information which you can read here lupusuk.org.uk/managing-fat...
Confusion, difficulty in articulating thoughts and memory impairment are common symptoms that are associated with lupus; it is referred to as ‘brain fog’ or ‘lupus fog’ by people with lupus. Stress, anxiety and fatigue are a few examples of the causes of brain fog, you can find out more about this in our blog article ‘Coping with Brain Fog’: lupusuk.org.uk/coping-with-...
It is important to remember that lupus presents differently in everybody therefore, no two people will share the exact same experience i.e. experiencing joint/muscle aches and pains.
A malar rash is usually a pink or redish-coloured rash which mainly occurs on the cheeks and the bridge of the nose. A malar rash is generally not permanent; it often appears when disease activity is higher or when exposed to certain triggers such as UV light. We published a booklet on lupus and the skin which you make like to read at lupusuk.org.uk/wp-content/u...
Peripheral neuropathy is a common nerve problem due to damage of small nerves of the legs and arms. It common causes gradual onset of decreased sensation in the feet sometimes follow by similar problems in the hands. Sometimes the person will notice a burning sensation or “pins and needles” as a result of this.
A tingling sensation in both the feet and hands can be caused by a few different factors. Raynaud’s phenomenon and Polyneuropathy are two common causes. Polyneuropathy typically affects the nerves that are responsible for sensation and feeling things. Damage to these nerves can cause numbness and tingling of the feet more commonly than the hands. To learn more about lupus and the feet, click here lupusuk.org.uk/wp-content/u...
Flu-like symptoms such as night sweats and chills are also commonly associated with lupus. To find out what criteria and tests are needed in order to make a diagnosis of lupus, click here lupusuk.org.uk/getting-diag...
Thank you, I’m hoping to get some answers soon although 6yr average diagnosis time has prepared me that it may not be as straight forward as I thought! I’ve had symptoms for the last 3-4 yrs so hopefully halfway there to getting refered on to people who may investigate further! Thanks for all the info it’s great .
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