ANA tests

Hello everyone

I have never posted on this forum before, only in the Lupus and Fibromyalgia ones.

I just wanted to ask for a bit of general advice on your diagnosis. I have not yet had a diagnosis but have been ill all year. I have pains in my back, neck, fingers, knees, and feet. Some days are worse than others. However, I do not have any swelling or anything like that. I also constantly feel exhausted (or most of the time, maybe constantly was a slight exaggeration), but the only things that are showing in my blood is a positive ANA test. It has come back positive three times now but the more specific tests like the rheumatoid factor and the lupus antibodies are not showing up.

I just have no idea what to think. I will see the rheumy again next month and he said if i get a fourth positive ANA test and am still having symptoms, then he will possibly start me on Hydroxychloroquine. I just keep getting the feeling that he may start me on the drugs but still wont quite have enough to make a 'formal' diagnosis. This isnt TOO worrying as it is the symptoms that cause my problems, so I understand that a diagnosis is just a label in a way, but still it would be nice to know!

Just wondered if most people had difficulty getting a diagnosis, or if I really did have something like lupus or RA, would they be more pronounced by now?!?

Thank you

:)

6 Replies

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  • Hi there

    I can't answer your question specifically but I have had a few diagnoses that seem to change all the time! I have a weak positive ANA and high Rheumatoid Factor. I was initially diagnosed with Sjogren's then Hughes Syndrome. Then I was told that I didn't have those and that I was probably getting Rheumatoid Arthritis. I am now going to go privately to see a Dr in London who specialises in RA to see if he thinks it is but it is now looking like it is not RA either. X rays and ultrasounds of my hands and feet are all normal so I am not convinced that it is RA now. If I have RA, it is mild.

    I have all of the CREST symptoms associated with limited systemic scleroderma and I think this is more likely and am going to pursue getting this ruled out as well. Scleroderma is one of the autoimmune diseases which can raise the ANA. It may be worth looking into it to see if the Scleroderma picture fits your symptoms.

    I think a lot of people have problems getting a diagnosis because so many of the autoimmune diseases have such similar symptoms and people can have more than one.It's often difficult for rheumatologists to pin it down so you are not alone. It is very frustrating though I know!

    Karen

  • Thank you for that Karen. I did see on my doctors notes last time something about mixed connective tissue disease. But they haven't officially said this to me!! Aaaargh it is so frustrating isn't it!!

  • Hi Natal - welcome to the site.

    Even when you have a diagnosis of RA things can feel very complicated and I am often riddled with doubt about mine. My rheumy diagnosed RA but told me to keep an open mind things may change. I asked him what he meant by that at the next consultation and he said that RA is simply a very general term coined by a bunch of rheumatologists for what are probably several different diseases. He sticks by RA for the time being but only broadly and because I want a label.

    I have often wondered if I might have Lupus instead - but I don't think I'm ill enough and I don't get the headaches or rash that seem to be listed high in the symptom list - so probably not. I have looked in the print offs for my blood tests but don't think I've been tested for Lupus. I have got a low positive rheumatoid factor and consistently high inflammatory markers so it has been assumed that I have RA by my GP and then my rheumy confirmed this cautiously and I'm now on Methotrexate and Hydroxichloraquine.

    Before diagnosis I was experiencing very intense pain in my wrists and hands and sometimes in knees and ankles and shoulders. I have only had very shortlived episodes of swelling - generally at the end of flare ups when it reaches its climax. I took photos of my hands when my knuckles and middle fingers joints were bruised looking and swollen and I showed them to my GP and rheumy. It was on the strength of these and my descriptions of pain that RA was diagnosed. The drugs seem to have worked in that I've not had any of that really awful pain for many months.

    I have however developed mild Raynauds and had a lot of widespread pins and needles. I emailed my rheumy to explain this in case it was important or worrying (the pins and needles felt very worrying!) and he has just communicated to my GP that I must now self inject with MTX so that it's more effective because he thinks the disease might still be active. I'm actually not sure it is really and every time these decisions are made I end up feeling responsible for them somehow - and wishing I worried less and just put up with things unless they are unbearable or even better - visible!

    I do understand the importance of having a name for things though. When I was in limbo for 9 months I thought I was going nuts or that doctors would assume I was - but actually the name is overrated I'm learning. There is so much overlap and so many varieties of symptoms that ultimately most of us have mixed connective tissue disorders or inflammatory arthritis and even with a name to make us feel credible and bona fide - the doubts still float about us and RA isn't a very known quantity to the population at large anyhow.

    Whether you have RA or Lupus or some other mixed connective tissue disease that fits somewhere between these - Hydroxichloraquine is not as powerful a drug as the other DMARDs and it is a first line drug for Lupus and a second line one for RA. You do not have to be regularly monitored on it and they check for eye problems a bit more often but as long is the dose is correct for your body weight these are very rare unless you've been on it for five years or longer. I hope this helps you feel a bit less lost re diagnosis and a bit more comfortable about taking Hydroxy. Tilda x

  • Hi I am new on here too but I have found out very recently that my diagnosis of RA was confirmed by the anti ccp test which came back strong/ positive ,this strongly suggests RA,myANA was negative,I hope this helps a little,x

  • If you can, try not to get too hung up about getting a label, especially if you have a rheumatologist who is willing to treat symptoms. Sometimes it does take a long time for things to fall into place and them to really make a firm decision about what is wrong, but actually the treatments are often the same anyway, and the rheumatologist will choose a medication that they think fits best with your symptoms.

    It does sound like you don't have a clear picture of one thing or another just yet, and even things like the back pain could point more to spondyloarthritis, though you don't usually get high ANA with that, so I can understand why you don't have firm answers right now.

    As far as "would it be more pronounced by now" - there are no answers. Some folk go absolutely years with only minimal symptoms, and some folk progress rapidly. Some folk get diagnosed young, and some much older. There is no "normal" with this kind of thing.

  • Maybe MCTD is your diagnosis. Ask them outright next time you have an appointment. I have raynaud's and RA. I had a positive ana (speckled) and was having trouble getting a diagnosis. An ultrasound scan confirmed RA for me as it showed active inflammation. You might request this, even if it's to rule out active RA. My consultant suspects though that i have a 2nd autoimmune condition too as RA can't account for all my symptoms. Best wishes, Naomi.

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