Went to see rheumatologist expecting a RA diagnosis, but his questioning is leaning towards something else

I've not had a diagnosis but since googling all the things the rheumatologist asked me and he wrote in his interim report to the GP, it's led me here.

Brief history. I've had OA diagnosed in one ankle for a few years now. The pain in my hands, wrists and elbows started about 18 months ago but is very different. It's unpredictable too. At the moment it's quite bad, waking me at night and I'm finding carrying a saucepan and flushing the loo difficult but other times it is hardly any trouble at all. I have had neck pain for years, literally, but put that down to the fact I'm an ex dancer.

I wish i hadn't googled all the blood tests and seemingly unconnected questions he asked me (mouth ulcers, dry eyes) as now I'm worrying. I was prepared to accept RA (without really looking into it tbh) but am scared there's more going on for me.

Full spine MRI tomorrow and follow up with rheumatologist in 4 weeks so lots of waiting around.

How do i stop googling (and worrying)?

Thanks

2 Replies

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  • Strength of mind! When you use Dr Google he can direct you to the end of the world as you know it! However - while you only see the worst scenario it is all too often a final diagnosis that is rather different.

    He's done all those blood tests and asked about symptoms, not necessarily because he expects a positive result but because all the positives and negatives add up to form an image for him - like when you do a jigsaw. He probably is thinking along the lines of some autoimmune disease - RA is only one and the one the wo/man in the street has heard of. There are many others - some perhaps worse, some less worse than RA. When he has ticked his boxes and sees where that takes him, he may still not have a fixed answer for you - that may lead him on to another load of investigations. Being a doctor is like being a detective - and in both cases there may not be any easy or obvious answers.

    You will have to possess your soul in patience as my mother always said. And if you don't learn anything else with an a/i disorder, you will learn that! But don't go to your next appointment thinking you will necessarily get a straight answer from him - you might, but equally you might not.

    There are a couple of things that spring to mind for me - but they aren't any worse than "RA" these days. RA is just one of a range of inflammatory arthritises and years ago they would all have been lumped together. Don't worry too much in the meantime! (I know, it's easy for me to say!)

  • Hi Avocados,

    PMRpro has given you some excellent advice. I'd like to add that is is important to make sure you stick to reputable organisation's websites when looking for information about lupus and related conditions. There is still a lot of incorrect/outdated information out there, so try to focus your reading to websites like NHS Choices, LUPUS UK, Arthritis Research UK and The Lupus Foundation of America who have evidence-based information.

    If you need more information about lupus at any point, we have a free pack which you can request or download from our website at lupusuk.org.uk/request-info...

    Keep us updated with how you get on.

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