Trying to get a diagnosis, what can I do?

Hello, hoping someone might be able to give me some advice or point me in the right direction. I have suspected arthritis – GP initially said psoriatic arthritis as I had a terrible outbreak of psoriasis all over my body and severe swelling and pain in my middle finger joint. The swelling and pain got so bad the GP prescribed 5 days worth of prednisone which helped reduce the swelling and pain significantly but it's still bad. Whether coincidentally or not, the psoriasis has dramatically cleared but the pain and swelling is increasing again and spreading to other areas – in the middle of my other hand on the top (if that makes sense) is particularly bad.

My issue is that it hasn't been officially diagnosed and I'm not receiving any treatment. The GP made a rheumatology referral back in November and I was supposed to be seen last Friday but the appointment was cancelled as the Consultant was supposedly sick. My new appointment has come through for the end of April!

I'm really worried and scared about having to wait so long for a diagnosis. I'm in a lot of pain and very limited in what I can do – hard to write, type, drive, do housework etc. and I also have a 1 ½ year old daughter I'm struggling to look after properly and keep up with. I'm also terrified about the long wait as everything I read talks about irreversible damage if left untreated (yes I know, Dr Google is not my friend!)

Does anyone have any advice? Could my GP at least request blood tests now so I could at least find out what's going on? I'm not sure how much it would cost but I'm willing to look into a private referral as I'm feeling really quite desperate, so if anyone has any advice or recommendations for private consultants or where I could look, that would be great too.

Sorry for this long post and thanks in advance.

8 Replies

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  • Hi, could your GP request for your consultant's appointment to be brought forward? Mine did once when I was in excruciating pain. Alternatively, ring the consultants secretary and ask her how much it would cost to see the consultant privately. If you decide on the private route check with the secretary who pains for any tests the consultant advises following private treatment i.e you or NHS

    Take care

  • Keep ringing the hospital and if when your having a realy bad day go to a&e and see if you can get help that way. Hugs.xxxxx

  • I think most of us went through similar times at beginning of RA I was three months before seeing a consultant even then for all I'd extreme swellings my hands swelled more than usual for it ,my feet/ankles very very bad too plus the rest ,also it didn't show up as RA in my blood tests but my consultant had been doing this for many many years he new it could not be anything else once I was put on sulfasalazine it started to subside worked extremely well for six years but for last year I'm going through a nasty flare up again now on methotrexate but not happy with it too many days/nights of feeling nausea s ,but I'm sure il get ok again soon ,just don't give up hope nothing happens very fast we have to be very patient not something I'm very good with ,but persevere I have to only a few months ago one consultant said I didn't have r a but imflamotary arthritis three weeks later my real consultant said my RA had now started showing in my blood tests so it's ups and downs just go with the flow don't expect quick miracles just know it will improve good luck

  • Hi. I was in a similar situation to you at beg of last year when suddenly in severe pain in many joints with swelling. I too was finally put on short course of prednisolene which stopped this - only to return when course finished. The gp can almost certainly do the blood tests. I went back in severe pain and virtually refused to leave the surgery until something was done. More blood tests that day showed a massively high inflammation level, I was immediately put back on steroids and gp rang hospital to get app brought forward. Was seen 10 days after that- and seropositive RA diagnosed. Have been on mtx and hydroxychloroquine for a year now and off steroids for 4 months and so far so good. Worth really pushing gp I think as the earlier the diagnosis the better the outcome seems to be. Good luck!

  • If I were you I would phone the rheumatologist's appointment number & explain what pain you are in.....some have a cancellation list that helps you jump the queue if you can turn up at short notice....

    I bet of some of these GPs who try to treat RA themselves before they refer patients to a rheumatologist had RA themselves they would be at the front of the rheumatologist's queue at the first twinge!

    In this case Dr Google is right .....the earlier the diagnosis & the quicker you can get the correct medication...not just steroids & painkillers...the better.

    Stick with it Kate...let's hope you don't have RA..but if you do you will read here that many of us lead an almost normal ,life with the odd hiccup!

    Good Luck with an early appointment.

    AC

  • Thank you to everyone taking the time to reply and for all the suggestions. Of course, when you need them, GPs prove impossible to get hold of and today I was offered the first available appointment of 6th March! I'm planning to camp out there tomorrow morning to try and get an emergency appointment. Have also been trying to get hold of the Consultant's secretary but no luck so far.

    I think part of it is the shock and denial that such a horrible disease might actually affect me especially as I'm only 35 but I know it can affect anyone at any age and people can suffer far worse than I am now so I need to give myself a good talking to! I appreciate people taking the time to respond and it feels comforting to have some online support.

  • Try calling the rheumatology department and say your appointment was cancelled and you don't think it's fair your now having to wait so long. Also go to GP and request blood tests (I'm surprised you've not already had them. You can also push them to request a sooner appointment.

    Please don't go to A&E as they are already over stretched and although you may be in lots of pain it's not right to be in A&E (I work in a hospital and see daily the strain it's under)

    Take pain killers, use heat/cold which ever helps. Soaks in Epsom salts help me.

    Hope you get your appointment soon xx

  • Hi curiokate, sorry to hear the news. I had ra two years before I found out the news, I went to go, had blood test to clarify it, then after went to rheumatology specialist, been on mtx one year now, no damage done thank God, hang in there you will get sorted, make a nuisance of yourself, I would to get results especially with having a toddler to look after. I feel for you, it's not nice being in constant pain, at night when I feel the aches I imagine little ants eating away the pain, sounds daft, but that's how I cope with it. Good luck hope you get sorted soon.😊

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