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Can I get a second opinion?

Posted , 7 users are following.

carla46402
carla46402

I am 43 and following a recent series of blood tests my GP was sure I had inflammatory arthritis and referred me to the Consultant Rhuematologist. I am in severe pain in my hands, wrists, feet and knees. I was a bit upset when I saw the Rhematologist as her focus seemed more on my weight and efforts to lose weight than any else. For example, she didn't ask anything about family history or anything like that, which I assumed she would. Arthritis is extremely common in my family, my mum and aunt are both currently on meds for Polymyalgia Rheumatica. I am overweight and I am trying to lose weight but I just felt I was viewed as a fat person responsible for my own aches and pains. The rheumatologist took further bloods and arranged a scan. The scan was of my right wrist and hand, which of all areas is the least effected, but none the less still painful. I have today received a letter from the hospital to advise the scan showed no inflammation (is it possibly because I've been taking anti inflammatories since this investigation started 6 weeks ago?) and that whilst my CRP and ESR levels are raised that this is probably due to my weight. I feel so upset. Don't get me wrong, I'm not looking for RA or any other medical complaint but I know myself that something is not right. I'm in constant pain and for someone who doesn't like taking pain killers for a headache, I am taking Neproxen everyday just to get through. I'm not a pill popper and nor do I want to be, but I just don't know where to go from here. I basically have been given no diagnosis, although GP believes differently and therefore don't know what to do know about the very real symptoms. Any advice would be most gratefully received. Thank you

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  • Tumtum1963
    Tumtum1963 carla46402

    Posted

    When my RA started over four years ago I decided that i must lose weight or peoppe wouldn't take me seriously and woukd blane everything on my near obesity. So I dropped gluten from my diet and also refined sugars, caffeine and most dairy products. I slso took up tai chi and yoga and pushed myself to get more fit.

    Eight months into my self imposed weightloss programme I saw the rheumy for a second time. I had lost about two stone by then. He doagnosed my RA because my hands were so swollen in a manner that could only be RA he said.

    None of my health profrssiomala have ME tioned my weightloss - now over four stone - but I do think it helps them to take me seeiously as someome trying hard to help herself.

    I haven't had much choice on the self help front where I live and also because in very drug intolerent. I am about to start a fourth DMARD after nine months off - weight has come off because of nausea and painful jaw and my sense of smell and taste have gone AWOL and this in turn has spoiled my appetite. I am in a lot of widespread pain and hate taking the coctail of pain meds forvit as you say. They no longer make much difference. I'm going to ask for a steroid jab to get things better controlled while I wait for the new DMARD to take effect. My ESR is currently 58.

    What about asking your rheumy for a steroid injection and if it works this shows that you have systemic inflammation? While it may give you much relief you could use this as a starting point to exercise and lose weight - which will in turn help your weight bareing joints and show that despite helping yourself you still have inflammatory arthritis - so aid diagnosis on several fronts?

    • Tumtum1963
      Tumtum1963

      Posted

      Ps sorry about the awful spelling - writing this on my iPhone away from home - it keeps locking so I can't edit or recheck!
  • carla46402
    carla46402

    Posted

    Hi all, after all your support and sound advice I wanted to give you an update.

    I saw my GP tonight, he was fantastic and furious with the Rheumatologist. He printed off the hospital letters and we reviewed them together. This is how the most recent hospital letter read: "this lady is obese, I am not convinced by the symptoms she says she has"!!!! I am shocked that a so called professional could write such a thing.

    My GP was horrified. While he acknowledged (as I do myself) that I need to focus on losing weight that it doesn't change the bloods and symptoms. He took to bashing his desk to tell me that I have inflammatory arthritis and he didn't know what this Rheumatologist was talking about. He's made me a further referral to my mums rheumatologist, who I've met and appears to be great. My appointment isn't until June, but I'd rather stick to the meds I'm taking currently and wait with the hope of a more constructive result and longer term plan.

    I will keep you updated, but wanted to say that I am so grateful for all if you who took the time to offer advice and support. X

    • kim94523
      kim94523 carla46402

      Posted

      Carla!  So happy to hear about your regular doc's outrage!  Did you have the Anti-CCP test done?  The sedmentation rate and the c reactive protein and the rheumatoid factor tests are all decent but can point to different diagnosis.  The only on that points to RA and no other know disease is Anti-CCP.  Period.  If you have elevated Anti CCP, you have RA not inflamation from any other disease or weight issue or food or anything else.  Demand that test or get it done independently.  That will shut them up once and for all... the JERKS!  If you have never heard of this test, Google it.  I would past a link but of course, the moderators will delete it if I do.  Good luck!!!!
    • Tumtum1963
      Tumtum1963 kim94523

      Posted

      40% of people with RA have a negative anti CCP though Kim although I agree that a positive one with symptoms is fairly conclusive. What is more conclusive of RA though is synovial swelling. Eveb if it's not RA there are over 200 types of infkamnatory arthritis - many of which are seronegative so keep pushing and don't let any doctor fob you off that weightloss is the be all and end all.
  • jill80751
    jill80751 carla46402

    Posted

    Hi, It sounds as if you are visiting the same rheumy as I did!! I saw a physio for fibromyalgia who insisted I ask to see a rheumy. I saw one on the nhs and it was a complete waste of time. I have been in pain since early teens and am now 53 but because I am seronegative had got nowhere.I paid to see a rheumy privately for a second opinion and he was wonderful and he asked for a pile of tests to be done, including a scan of hands & feet which luckily for me showed ra. I am now seeing another rheumy on the nhs who is as good as the private one so am finally getting somewhere. Although I am overweight none of them mentioned it but the first rheumy didn't show interest in anything. It shouldn't be this hard for a doctor to make an effort. You are very lucky that at least your gp is excellent. I hope you have better luck with your mums dr.

    All the best

    • carla46402
      carla46402 jill80751

      Posted

      Wow Jill, what a terrible time you've been through. I seriously worry when I hear such awful stories about people's experiences. It shouldn't have taken for you to pay privately but thank god you did and you are now getting the support you need.X
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