DNA binding autoantibodies ? Lupus? ANA please help

[Sam4679]

Hi to you all I'm new and hoping that you may be able to help, I went to doctors in April with lots of symptoms of lupus and doctor requested ANA bloods etc. The results came back as 1:1600 with homogeneous pattern and a DNA binding autoantibodies reading of 1IU/ml <9 and he explained to me that he thought that I had lupus and referee me to a rhumatologist. He has ran the test a further 2 times and they have come back the same , I went to see him yesterday and he told me that the high ANA was nothing to worry about I hadn't got lupus and to carry on taking naproxen " if that helps" and he doesn't need to see me again! Does anyone think that I need to see a new doctor I think I do but I'm concerned that I'm just wasting people's time but on the same grounds why did my doctor think I had it ? I have been back to see my doctor and his answer to me was " well I would have thought you would be pleased you haven't got it" I'm so confused any advice fearfully recieved

[Chris21]

Auto immune diagnosis seems very complex and can take years before finally reaching a decision. As far as I'm aware, it isn't just bloods, as this can be caused by numerous illnesses, the history of your symptoms is also taken into account and yes, it is great if you don't have lupus but what do they think is causing your problems?

Lupus uk have some really good leaflets/books that explain how it can affect you. It's the best £10 I spend every year.

[1985mum]

A lot of rheumatologists tend to specialise more in rheumatoid disease and don't have the specialised knowledge for lupus. If it was me I would get a second opinion and find a rheumy who has a special interest in lupus.

I'm in a similar situation to you with no diagnosis yet and I have been told by two supposedly cluey doctors that I don't have any kind of connective tissue disease. But with the amount of research I've done and investigations I've had done I know it's the only thing it can be. So, two years in and I'm still fighting tooth and nail not to be put in the too hard basket. All the best for getting some answers and I hope you find a doctor who will listen but it can be a long road and requires determination. Almost anyone here on this forum will tell you that. I don't say that to scare you but to give you courage to push on and don't give up.

[Sam4679]

Thank you so much for answering guys much appreciated x

[EOLHPC in reply to Sam4679]

Sam, you've got some great replies which say pretty much what I would've...so no need to repeat. My suggestion would be that you message our Lupus UK representative here on forum:

Paul_Howard

He is usually able to suggest a regional clinic that has more expertise in lupus + immune dysfunction & connective tissue disorders.

My case is v peculiar, but underlines the simple fact that diagnosis can be problematic: am 62 & was diagnosed with lupus as an infant in the USA, but no one told me lupus was the cause of my dodgy health stuff. So when I moved to the uk at 21, the NHS took over my health stuff unaware of the underlying lupus. My gps & hospitals took over 30 years to figure out I had immune dysfunction & connective tissue disorders....had Lupus UK + this forum + the Internet existed earlier in my life, I'm sure I could've figured my lupus etc out sooner & forced the NHS to diagnose me sooner. As it is, my multisystem debilitation is quite advanced, but thanks to my brilliant Lupus & Vasculitis clinic, my immunology + eye + urology + gyn + etc etc clinics, I'm on multisystem treatment plans that are helping me feel more stamina & resilience + less pain than I have since my 20s 🤗

Hope you'll let us know how you get on

🍀🍀🍀🍀 coco

[milkwoman]

Definitely go see a different rheumatologist! You clearly have some type of AI disorder (most likely SLE) and you need to start treatment (most likely hydroxychloroquine) to control it.

Did you get a copy of your lab results? (Please do so). I'm guessing that "DNA binding antibodies" the doc is referring to are ds-DNA which are indicative of lupus. Also, your POS ANA with a homogenous pattern is also indicative of lupus. The test is explained well here:

labtestsonline.org/understa...

Good luck!

[Sam4679]

Thank you all for your advice x

[Paul_Howard Partner LUPUS UK]

Hi Sam4679 ,

If you are not satisfied with the diagnosis and treatment plan set out by the consultant then it is worth asking your GP to refer you to another consultant. If you let me know what part of the country you live in I can provide you with information about any consultants with a specialist interest in lupus who may be near to you.

If you would like more information about lupus and how it is diagnosed, we have a free pack which you can request or download from our website at lupusuk.org.uk/request-info...

[Sam4679 in reply to Paul_Howard]

Hi Paul i live in market harborough if you could let me know if any specialists near by that would be great x

[Paul_Howard Partner LUPUS UK in reply to Sam4679]

Hi Sam4679 ,

I believe that Dr Hassan at Leicester General Hospital may be the closest lupus specialist to you. There is also Dr Peter Lanyon at Queens Medical Centre in Nottingham.

[Sam4679 in reply to Paul_Howard]

Hi thanks for that dr Hussein was the specialist that I should see but both appointments were with a dr from my own surgery that was doing it for him, would be de Hussein have seen my results etc?

[Paul_Howard Partner LUPUS UK in reply to Sam4679]

Hi Sam4679 , I'm afraid I couldn't answer that question - I wouldn't know.