If you are ANA positive does it mean you have Lupus, or can it mean something else?
New to the group and so glad I found you
If you are ANA positive does it mean you have Lupus, or can it mean something else?
New to the group and so glad I found you
Hi.it means you have antibodies in your blood but it doesnt definitely mean you have lupus.do you have symptoms? Have you been referred to a rheumatologist? X
I have loads of symptoms, I was sent to Neurology for an MRI - normal a d a Pet scan still waiting for the result. Meanwhile had a petechiae and purpura rash (undserskin painless), gp send me for bloods. Weak positive ANA low vitamin b9 and d. Referred to rheumatologist who passed it to dermatologist without talking to me.
Symptoms; slurring, cant write, unsteady, mouth ulcers dry eye, joints painful. Awful fatigue , headaches I am sure there is more...
Write everything down if no joy with dermatologist asked to be referred back to rheumatology.hopefully they will do DS-DNA,ANA,compliments and immungloblins. Urine too.Have you had your thyroid checked ? .certainly sounds as of something is going on but there are other AI illness which it could be other than lupus. Good luck x
Thanks, the GP sent me for loads inc thyroid and ama weak + came back.
I feel I am a hypochondriac so many symptoms! I saw the rheumatologist a few years back and was given a diagnosis of fibromyalgia. I've been to my gp for a headache that lasted a year +, I saw him again because I had a feeling like I had tight socks on he checked they weren't swollen. Now all the other things started like slurring and straining, loss of balance and unable to write. Etc
I think weve all been made to feel like we are hypochondriacs .stand your ground and keep pushing for tests and diagnosis.it took them 5 years to diagnose me with lupus x
Now you have the diagnosis what effect does it have on you and others?
It changed life beyond recognition. I cant work now as I'm on immunosuppressants and I worked in a high infection unit.( lupus has damaged my lungs and my kidneys ) i have to be very careful in winter avoiding colds,flu etc so I cant see anyone inc family ,I avoid shops and busy places ( no wonder lockdown was a breeze for me ) fatigue often means I have to sleep through the day.limited energy restricted things quite a bit.brain fog affects concentration, migraines triggered by the sun to name just a few.endless hospital appointments,drugs and blood tests (currently bloods are every month) . It's a rollercoaster trying to find the drugs combo that works.my children are grown up ( almost...27&17) my illness impacts most on my youngest but we crack on xxx
You poor thing. It’s awful when your at the stage where you think you are a hypochondriac. I have been there. I was lucky the dermatologist send me to a rheumatologist who joined the dots and did a lip biopsy which confirmed Sjögren’s syndrome. He said it can take up to 6 yrs to diagnose. Sometimes test comes back negative but he said it could still be Sjogrens. I had Chronic mouth ulcers, dry eyes, lack of saliva, cold hand and feet sometimes go purple, awful fatigue, brain fog, dizzy when standing , memory etc. Your not imagining things. Some of the symptoms of lupus can be the same as Sjogrens. As spanielmadlady said keep pushing. It’s getting the right person to listen and give you a proper diagnosis. Best of luck
Hi, I'm ANA positive. It means you have antinuclear antibodies in your system. These attack your immune system until you get them to a stable number. I originally tested at over 10,000. In a normal person your ANA should be zero. I'm currently between 300-400 and have been for a few years. My sle was caused by being left on acne medication by doctors for too long as a teenager. As soon as we realised it was that causing it, I stopped taking it and the symptoms disappeared and the numbers dropped fairly quickly but will never be gone. There are a few things I cannot have now as it will cause the numbers to increase.
ANA on its own means nothing. Almost 26% of the population has a positive result according to a study in 2013. It has to be seen in relation to all the other autoimmune blood tests for inflammation and medically diagnosed symptoms from the diagnostic criteria.
It sounds like dermatology is the best place for you to start due to your ongoing rashes. They can assess the cause and hopefully provide a treatment for you. They may also run some more bloods to check for underlying causes if there is any uncertainty.
Once that has been resolved, other referrals may be needed to get to the bottom of things. If you are suddenly unable to physically write and having headaches then neurology seems like another consultant you will need to see. Is it painful to write or can you physically not move your hand?
Can I ask why you have joined a lupus group? Has someone suggested lupus as an answer? Your symptoms definitely do not sound 'classic' but it is a condition that mimicks a lot of others so it's often hard to tell without positive blood tests alongside symptoms.
Hope you find some answers soon x
I just came across it, the gp said I tested positive for the lupus marker. Sorry, I thought it might be that. Maybe I shouldn't be on here?
Oh I didn't mean it like that, everyone is welcome here. It's just a rare condition so people often don't know about it unless it's been suggested by someone. I didn't even know it existed until I was diagnosed.
There is a lot of misunderstanding about lupus in the medical community because it's so rare. Your GP doesn't seem to have any experience but that's okay. ANA is one test that is part of the blood panel they need to run to test for lupus. The panel generally includes ESR & CRP (to check for active inflammation but they don't specify what's causing it), C3 & C4 (known as complements - they often indicate active lupus as they are trying to clean up the inflammatory damage), DS-DNA (which is only found in lupus patients but we don't all have it), Liver function, kidney function, thyroid, and vitamins (D, B12 and calcium are commonly checked). Don't worry about learning this stuff just now, im just illustrating how many components there are. It's this overall picture along with your symptoms that will need to be looked at if they suspect lupus or another autoimmune disease. Others scans might also be needed of specific organs if there are issues. This is why the diagnostic process can take a while (especially with the pandemic).
Joint pain and fatigue can be signs of lupus but they can also be signs of a lot of conditions. Hopefully your referrals and blood work will help them work out what is going on so that they can help you. In the meantime I would recommend keeping a note of any symptoms and seeing what helps in terms of lifestyle changes. Things like cod liver oil, epsom salt baths, heat packs, and low impact exercise (like pilates and walking) can all be really helpful for joint pain, no matter what the cause. For fatigue, exercise and sleep hygiene are the key ways to manage it. You need to find a balance between them because doing no exercise makes it worse, but not enough sleep will also make it worse. If you are unable to do much exercise at the moment then starting with 10 minutes a day of basic yoga or walking is a really good idea.
Hope that makes sense and you can find a bit of relief while you wait for answers.
Hi Katie 🤗 welcome to the forum 💐 u will learn more here about lupus n living with lupus.
When I was diagnosed in 2017 I had never even heard of lupus!! I wasn't on the internet at that time so I joined lupus UK n got their magazine (4times per year) n learnt more about it that way. As soon as I did get WiFi I joined this fabulous group who know more about the illness than most doctors!! U have definitely come to the right place!!
Unexplained symptoms n thinking it's all in the head is soooo common with us coz lupus is hard to track down n not much is known in the medical profession.
I felt alone n isolated when first diagnosed but now I'm here with people who understand the frustrations n limitations of lupus etc I feel we r all kindred spirits!!
Lupus UK is a fabulous source of information.
If u haven't already Google spoon theory which explains in an easy way what living with lupus is like..helpful to pass on to family n friends.
As I understand it if a blood sample tests positive for ANA it is automatically sent for further test which is dsDNA which is the definitive test for lupus n can take a few weeks to come back.
Any questions just ask n u will find a way through it...we all understand n we all hold your hand!! You're not alone 🤗
🌈😽😽Xx