Quite Confused SLE

Hi, I have been seeing so many different doctors for the past 2.5 years now and always seem to get different opinions. I am constantly fatigued, constant pain im my right shoulder which goes down my arm into my fingers, High Anxiety, have lost interest in all my sporting activities which I use to love and in general lost the thrive for life. I finally found a doctor who decided to do multitudes of tests and one was a ANA test.

She called me in after about 2 weeks and told me I had small signs of SLE... She seems to think my anxiety is more important than what the blood tests revealed. so My question is do I have SLE because I cannot get a straight answer out of her.. She said because there is only small signs of SLE it is nothing to worry about but I AM CONCERNED... or shouldn't I be??? Please Help.

Thankyou for reading.

8 Replies

  • I'm not surprised you feel confused and concerned. It's always difficult when no one seems to be able to give you a clear answer. Unfortunately SLE can be quite hard to diagnose and there aren't any quick fixes even once you have a diagnosis. Everyone is different including doctors and some prefer dealing with the symptoms rather than over worrying about the cause; unless the blood tests are concerning. If however you are like me and not knowing is worse than having an answer, and it would probably cause more anxiety not knowing, then I would ask to be referred to a Rheumatologist.

    Do hope you find some help from the best source soon. All the best Tinksy

  • I agree with Tinksie's advice. Just to add that I feel the anxiety you describe is entirely normal and understandable. By hanging a question mark over such a suggestion the doctor is creating further anxiety. I share your anxiety myself and think anyone who deals with uncertainty over diagnosis will feel just this way too. The way I see it this is anxiety which is secondary to lack of clear diagnosis and treatment. Whenever I've been given a clear diagnosis of anything I've taken it straight on the chin and been very relieved because it means I'm not going mad. I'm not an innately anxious person but this sort of thing tests anyone's nerve. I'm sure if you had a diagnosis you agreed with then you would deal with it well.

    Is she a rheumatologist? If not she needs to refer you to one as only a rheumatologist is qualified to diagnose a rheumatic disease such as SLE.

  • No she is a GP.. she is sending me to a physiotherapist to help with my muscular pain I'm having in my right shoulder and arm which she thinks is caused by my neck but my neck is fine. I think I will ask to see a rheumatologist just for peace of mind..

  • Yes - she must refer you because she's just a generalist at the end of the day. My old GP was the same but he did refer me as soon as my rheumatoid factor came back positive and my inflammatory markers, high. He did like to take on the role of a consultant sometimes but over four years he learnt that my rheumy had to make the diagnostic decisions. He was a great GP and I miss him but have a good new GP I'm learning. Like most GPs she defers to specialists though. This is what yours ought to do at this stage. Even a physio can't really work on you until they know the cause of the pain because a systemic illness - any type of inflammatory arthritis - is a different beast to a mechanical injury or wear and tear arthritis so they could do more harm than good. ANA can also be positive for Rheumatoid Arthritis, Spondyloarthritis, Scleroderma and others as well as

    Lupus. Best of luck pushing for a referral.

  • Beast is the perfect description of these complex illnesses. We keep on fighting and hoping for that miracle that will slay the beast.

  • Hi ssb04

    It is so easy to feel confused and anxious dealing with these illnesses!.

    ANA is not a foolproof diagnosis on it's own for SLE. It tells the doctors there's something wrong with your immune system that can include a lot of different conditions!. It depends what other tests your GP did and as ANA was positive you should ask for a referral to a Rheumatologist who will do more specialised tests. It's good though that your GP seems knowledgable about these illnesses. A lot are not!

    Good luckX

  • Hi, I came searching today because the rheumy has just started me on plaquenil ... But your post reminds me of my own experience. I've had SLE for 12 years I didn't know for the first 3 or so because my gp felt that my symptoms were basically under control and we could worry/deal with when we needed to... It was the dermatologist who told me, and dr said yes but until we need to worry...

    I found another GP who did refer me to a rheumatologist - who ended up saying the same thing the first gp had. This past spring gp2 who has remained my primary care physician in the meantime decided that although stable is good, it was time to check again. So I was back to the rheumy who decided that I should take azathioprine (with prednisone for the first two months) and now plaquenil. Hang in there. - if you have doubts about your gp, find a new one. Good luck to you, the journey to diagnosis can be a long one - know the good folks here are great support and will be here for you when you need an ear or shoulder.

  • Hi ssb04,

    Your concern is quite understandable. I think it might be prudent to ask your GP for a referral to a rheumatologist so that you can have further specialist investigations and they can discuss whether a treatment plan might help to alleviate some of your symptoms.

    If you'd like more information about lupus and how it is diagnosed, you can request or download our free info pack at lupusuk.org.uk/contact-us/

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