Advice please - could this be lupus?

[cappygal]

Hi,

I hope you may be able to help advise me. I started with agonising right-sided chest pain (suspected pleurisy) after an ear infection back in March this year, which then quickly moved to both sides. This gives me sharp sudden pangs of stinging, stabbing, itching and sometimes vibrations (like a wheeze) at both sides of my chest and my sides and my back and has continued for months. It feels like someone is stabbing me unexpectedly and I also have sudden uncontrollable chest wall spasms. My GP suspected arthritis and in May my anti CCP came back mild/moderate but the NHS Rheumy was dismissive and I've since seen a private rheumy who suspected early RA but then referred me on again. In May I started with sharp intense stinging and hammering finger and toe pains, followed by my hips and my knees.I've had lots of blood tests done again at rheumatology clinic but currently all normal/negative (including CCP and ANA) and including inflammatory markers. I have daily chest and widespread joint stabbing pain and struggling to function and sleep with this and worry. I've paid privately to be seen by a respiratory specialist but have to wait a while for a NHS scan. I'm looking into private MRI as I'm really scared at what's happening. Does this sound like lupus? Does anyone have advice on what imaging tests I should be asking for/whether A&E would be worth a visit as the pain just gets too much for me to cope with at times and I don't know how much longer I can cope.

Has anyone else had these symptoms and is also seronegative with lupus?

Thank you.

[whisperit]

Hello cappygal,

As you know, a small proportion of people with lupus-type conditions test sero-negative for ANA etc. Otherwise, the leaflet on diagnosis on the LupusUK home page here mentions the main tests.

That aside, I'm not sure what the outcome of the chest investigations is - I guess you've had chest X rays as well as much stethoscoping etc? And the outcome of any treatments to date?

I'm sure I would be worried too, but since you've had 2 rheumatology opinions already, I'm afraid I can't offer any advance on their opinions!

But you are obviously still unhappy - as I would be - so my main thought would be to make sure that the medics are offering a credible explanation of your symptoms (you don't say what they have suggested to date) and most important, a practical plan for the next steps you should take...

Others here might be more helpful, but please do keep in touch x

[cappygal in reply to whisperit]

Thank you very much. Yes I've had the normal tests you mention but feel like the doctors simply haven't pushed anything forward and helped me. Ive been back so many times over the last 6 months in pain. I have struggled to cope with it as I only have OTC painkillers.

Nothing has been suggested but I have my rheumatology appt next week where I am going to push for further tests/help and I'm trying to figure out whether to pay for an MRI privately - the wait is quite long for imaging 😥 x

[whisperit in reply to cappygal]

All I can think of is that when you have your rheumy appointment, you insist on getting a clear statement from him/her of what s/he thinks is going on and what s/he proposes as the plan of action.

My rheumy is hopeless at this - it's only when I see his letter to my GP weeks later that I start to understand his thinking.

Maybe take a friend/ally to the appointment who has the one job of making sure this happens?

Hope it goes well x

[cappygal in reply to whisperit]

Thank you for the tips - that's really helpful. I didn't ask for that last time and actually left feeling that I had more questions than before and no answers I'm going to make a list of my questions and keep asking until they give me answers/a plan like you say. x

[whisperit in reply to cappygal]

I expect part of it comes with the territory - these kinds of conditions are really hard to pin down. But I often wish my rheumy would just 'fess up and say, "I don't know what is going on" instead of ducking the question. The other thing I have found causes me a lot of worry is knowing when to get worried and call the doctor and when to just suck it up. I raised this with my GP today (feeling guilty because I booked an urgent appointment after a day of severe nausea and being told there's no routine apmt available for two weeks. Is that really "urgent" or will they now hate me for wasting time?). I am trying to be as direct as possible with medics now and ask for direct answers....sometimes it works x