Confusion

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I have never been officially diagnosed with RA. About 3 years ago when it all started my doctor said I had a very high factor and I was put on medication and observed. This year I cam off the medication to see if it was doing any good or not. My issue is my specialist says that she doesn't think I have RA, she says she can't see any proof that my symptoms are RA but that there is a reasonably high probability I will dvelop it due to my factor in the future. I find this very confusing. My symptoms match that of RA, I am under the supervison on the RA depatment yet they won't say that's what I have. It is not that I am looking to be labelled or anything it is just that I am confused. When I ask her what she thinks it is she shrugs her shoulders and says there are many things it could be. Has anyone else had an experince like this? 

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9 Replies

  • Posted

    After a blood test my GP immediately diagnosed RA which was later confirmed by my RA specialist.  From what I hear and read on this forum the blood test is definite.    I would rather be told I had RA or not,  I believe early treatment is important.

    Good luck Sophie.

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    • Posted

      Well my Doctor said I had a very high factor after lots of different blood tests, but specialist doesn't want to call it RA. I don't know how to tell if the medication was helping or not because when I came off it and my symptoms got a lot worse, the specialist said there is no connection...

      ! Madness !

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  • Posted

    Hi Sophie, I must agree with you about the confusion. I had a range of blood test done after a spate of unexplained pain in several joints . I had a very high inflammatory marker which led me to consult  a private Rhuematologist who quickly diagnosed Pallindromic Rheumatism, I was given hydro cloraquine which fend off the attacks. My NHS consultant then put me on to another drug  Salfaza ? Which I was unable to tolerate.  I am now going forward for biologics.

    My confusion is that my diagnosis  has now been changed to Pallindromic Rhuematoid Arthritis. I am unaware of what stage this happened.

    Could I have had this from the start?  Looking back I have had this for a few years but was unaware because it had happened infrequently. 

    I need to ask more questions off my Rhuematologist.

    Maybe it is just the language used, are these two conditions one in the same?

    like yourself  I am confused.

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    • Posted

      Yes I think you have hit on something there. I do think there is confusion generated due to language and understanding. Maybe get a second opinion although they are loathed to disagree with one another so that might be difficult. I might ask to switch to a different one. I wonder if mine is because of how it started as it appeared to be triggered by a virus. All I know is it is getting worse fast and that scares me. 
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  • Posted

    There was confusion when i started with RA too. I went to a Rheumatologist who diagnosed fibro myalgia, then because I had inflammation changed it to poly myalgia Rheumatica. It was a long time before I changed Doctors and I had new blood tests done and my rheumatoid factor was 15 later going to 17. and I was sent to a new Rheumatologist who still was hesitant but gave me MTX and Hydroxycloriquine. It wasn't until my inflammation levels didn't reduce that I was sent for a bone scan which showed that huge amounts of inflammation was still pooling in my wrists and hands, ankles and feet that She finally took it seriously and gave me a biologic DMARD. All this took about four years until I got to this stage and about two years before I got any relief at all. It's a hard diagnosis to make, especially when they can't see damage and it takes persistence on our behalf to keep pushing. Good luck.

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    • Posted

      Yes I can see that is must be hard to diagnose. I just feel because whenever I go and see them they don't get much visible evidence they are not able to build up the whole picture of my life the rest of the time when I'm struggling etc... plus I do tend to minimilise my symptoms!

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  • Posted

    Hi Sophie,

    You are not alone and to confound matters everyone presents differently!.

    Just wondering if they did the Anti CCP blood test as well as the Rheumatoid factor?

    I've been told that both of these were very elevated in my case and I'm on several meds for Rheumatoid (Orencia, Arava, Sulphasalazine, Plaquenil).

    My inflammatory markers (ESR, CRP), however, have never been abnormal and I've often wondered if I've been misdiagnosed.

    On a few occasions over the years I've stopped taking the meds but always ended up going back on them after a few weeks.

    My main symptoms are hair loss (before I ever started treatment), gum disease (have lost several teeth at this stage), extreme fatigue and painful hands and feet. There is also a strong family history of Rheumatoid disease.

    Was your specialist doctor happy for you to come off your medications?

    What were your medications?

    Has your condition deteriorated since you came off the meds?

    From any research I've done it has been emphasised that treatment needs to be started early so as to prevent later deformities etc.

    There are a lot of auto immune conditions similar to Rheumatoid many of which are treated with similar meds eg

    psoriatic arthritis.

    I understand completely why you're confused and can't really offer much advice here.

    All I can say is that you are not alone in your confusion.

    Best wishes.

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  • Posted

    I was on this:Quinoric 200mg

    Yes my Doctor was happy for me to come off it. My symptoms did get worse. When I was on the medication my symptoms mainly only happened in cold months but after I stopped (April this yer) I have had consistent pain. I struggle to get up and down the stairs a lot of the time and various other aches and pains but she was adamant that that was not because I had stopped the medication.... So I am not too sure what to think. Xrays show bones and joints are ok. But I am due an MRI this Sunday because she said my spine looked 'Wrong'. 

     

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    • Posted

      Hi Sophie,

      I'm at a loss as to what to say.

      I would have thought that the specialist would have suggested that you go back on the hydroxychloroquine (the other name for your Quinoric and my Plaquenil) when your condition had worsened after you stopped taking it, seems very strange (to me) she didn't.

      I have both Osteoarthritis and Rheumatoid (or so I'm told), lately they've started talking about Fibromyalgia!

      Have had a disc removed from my neck, 2 torn rotator cuffs etc. I take a lot of supplements e.g. vitamin D, fish oil, turmeric, Glucosamine and Chondroitin, Hairburst, topical minoxidil, to name but a few.

      Please let us know how you get on with your MRI, hopefully you'll get a diagnosis soon enough.

      Best Wishes confused

       

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