Positive Speckled ANA blood test

[Dawn31019]

Hey there I’ve recently had a positive speckled ANA blood result have to go into GP with extreme fatigue aching heavy muscles in lower limbs and aching sore joints. I have been referred to the rheumatology but I’m on the waiting list to be seen. The GP has her suspicions of lupus ,RA connective tissue disorder. I have a history of fibromyalgia and I am also a coeliac. Please can anybody give me information of what I can expect from seeing rheumatology and just because I’ve had positive speckled blood test does that mean I’ve got lupus? Or did they do further tests for lupus? My mother’s birth mother had lupus does it run in families?. So many questions in my head don’t want to get carried away googling symptoms please can somebody just tell me what the most common symptoms of lupus are , and is it debilitating. Thanks in advance Dawn x

[JKUK]

Hello, I have just asked a similar question but I understand that positive speckled ANA test can mean an autoimmune condition but it can be a false positive. There are a list of 5 other conditions it could be as well (have you seen that list?) but given your family history I suppose it is more likely to be lupus.

Interesting you say you are celiac. I’m not but thought I was as i was having horrible reactions to gluten / wheat. Where you born with celiac or did it come on later in life?

Wishing you well.

[Dawn31019 in reply to JKUK]

Hi thanks for your reply

I wasn’t born with celiac but I suffered for years before diagnosis I am 55 now and was diagnosed about 4 years ago. I was told for years I have IBS despite a family history of celiac .

Can I ask what are your symptoms and what led you to having A ANA blood test ?

Dawn

[JKUK in reply to Dawn31019]

Hi - yes of course, I will try to summarise! Gastro issues, chronic constipation and reactions to food. If I eat gluten / wheat I am very unwell (I’m not celiac but have scarring from a reaction to something). Extreme fatigue (past year) laryngitis or something similar twice annually for 2 weeks for about 10 years, jaw / ear pain and migraines and then this year reoccurring urine infections every week even on a lot of meds, and joint pain (was struggling to walk for months, when previously I did a lot of cardio). I was diagnosed with MCAS and Heds but my consultant wanted some more in-depth tests and here we are!

[JKUK in reply to JKUK]

Also sorry to hear you were only just diagnosed after suffering for so long! Hope the diagnosis helped you manage your triggers and flares xx

[Dawn31019 in reply to JKUK]

Oh my word sounds like you’ve been through the mill as well you poor thing.

I am really concerned for my mobility as I’ve really been suffering muscle and joint pain along with extreme fatigue which is causing me problems with walking getting up from sitting , climbing stairs after walking and really bad back pain and stiffness. I’ve managed so far to hide this at work . I have a job where I do a huge amount of walking every day six days a week whilst wearing a stab vest. I’m really struggling and fear for my long term mobility. I have also been told by my GP that it looks like I have Lipedema that prob explains why my legs are so heavy .

Dawn

[JKUK in reply to Dawn31019]

Gosh that sounds tough. Have you seen a rheumatologist? Who asked for your tests? Can they advise you on what to do around working? it’s hard when trying to balance work/health. But you need to make sure you are safe as well as physically able and not making your illness worse.

Sorry lots of questions there.

[Dawn31019 in reply to JKUK]

I am on a waiting list to see a rheumatologist not sure how long that will be. I can access occupational health but not sure what I’m dealing with yet . Something or nothing , all I have is a positive ANA blood test and a bunch of horrible symptoms . I suppose I’m a bit anxious fear of unknown . Thanks for your time , I hope you get sorted to it’s miserable isn’t , especially when your dealing with the unknown

Dawn x

[Villagelife]

Hi Dawn a positive speckled pattern ANA is non specific and doesn't mean you have lupus, people can have this speckled pattern without a reason. I had the same result, this led to having further blood tests an autoimmune screen. Some of these where positive some negative. As far as I'm aware a lupus diagnosis is made using blood tests as well symptoms. Autoimmune diseases including lupus can be hereditary. Im yet undiagnosed my positive blood tests Anti ro & Anti lo & another test plus symptoms are suggesting lupus but I understand it can take a long while to actually diagnose lupus. My advice is stay positive, take note of any changes you may experience, pain, rash etc. along with photos if possible. Don't Google symptoms if you can avoid it, you can soon tie yourself in knots and make yourself feel worse. Hope this helps.

[Dawn31019 in reply to Villagelife]

Thank you , I am trying to stay away from Google , I understand I’m a long way off diagnosis and I am trying to stay positive but it’s difficult when you feel so rough , keep hoping tomorrow will be better hey . It sounds like a long process and as I already have one autoimmune disease and a family history , it’s easy to jump to that diagnosis in my head . Thanks for your reply

Dawn x

[Villagelife]

Its very easy to jump to a diagnosis. I could give you a list of illnesses I though I had from Dr Google lol & lupus wasn't even on my list until the 2nd lot of blood test pointed the GP in that direction. I found that worrying what might be wrong made me feel worse. Take care, hope you feel better soon🤞🙌

[Dawn31019 in reply to Villagelife]

Thank you 🙏

[Northerner1]

Hi Dawn31019 - hope you are well. It is a scary time in the unknown, when you are just waiting for answers.I was in the same boat as you after I tested positive for ANA too after similar symptoms - & as you say it is tough not knowing when you feel so bad.

I made the mistake of going down the neurology route first, with the result dismissed as spurious by the consultant.

The test was redone (ANA positive again) and I was fortunate to see a brilliant rheumatologist - whose investigations found I was ACA positive & VitD deficient, as well as having a slipped disc and facet arthropathy in my back. I know have to have regular tests and check ups to monitor how the ACA develops as it indicates Scleroderma.

Ultimately the ANA indicates there could be an autoimmune issue but you need the rheumy to help you work out what it could be.

I hope you get to see someone soon!

[Dawn31019 in reply to Northerner1]

Thanks for your reply and support , I need to have patience I feel it’s going to be a long road . I just need some relief . Sorry to hear your issues. I expect the Covid pandemic isn’t helping with the long wait , the NHS are on their knees . Thank you 🙏

[TGee]

I've had a positive ANA for over 10 years but have never tested positive for lupus and am tested every year. I have tested for sjorgen's, a change in diet has sorted joint pains I had a long time ago and fatigue is manageable also. Hopefully you'll get some results soon, try not to be too anxious.

[Dawn31019 in reply to TGee]

Thank you for taking the time to reply , glad your well . I hope it’s something and nothing but been feeling rough for some time now . X