Still playing the "what's wrong with Sophie?" game....!

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Starburst
Starburst Member Posts: 2,546
edited 28. Jan 2011, 08:52 in Living with Arthritis archive
I saw my rheumatologist today. I told him how bad things have become. He said it's not normal for me to be in this much pain because on examination, although I'm tender and swollen, it's not that awful. Also, I have no joint damage and no rheumatoid factor in my blood. Therefore, he thinks there may be something else going on. He's sending me for an MRI scan and did a blood test but is referring me to a hosp in London. Apparently, it's a specialist rheumatology centre of excellence, whatever that may be!

I'm feeling a bit down because I felt like he was implying I'm a hypochondriac. He even said my arthritis isn't serious. It's negatively affecting my life, so it feels quite serious to me!!!! He said that even people with full-blown RA don't experience daily pain like I do. Um, what??!! How can he even gauge it? Surely pain is subjective anyway! I questioned him about other types of arthritis and he said he tested for all them all. What about sero-negative types of arthritis?

Anyway, I'm glad I'm getting a 2nd opinion, even if it is frustrating not having a diagnosis. I hope they can shed some light.

Thank you for listening.

Comments

  • stickywicket
    stickywicket Member Posts: 27,719
    edited 30. Nov -1, 00:00
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    Ok let’s get a couple of things right, Starburst.

    1. It’s serious.
    2. People with R.A do experience daily pain. Trust someone who has so far experienced approximately 18,250 days’ worth.
    3. I don’t think he’s implying you’re a hypochondriac but, at the end of the day, he can think what he likes as long as he refers you for the relevant tests.

    I know nothing about all the different tests for arthritis but if he’s referred you for an MRI scan and to a specialist rheumatology hospital so much the better. Let’s hope they can sort things out for you and prescribe something that works asap. I really hope this gets sorted for you soon. R.A.’s bad enough: uncertainty’s worse. All the best.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    And he calls himself a rheumatologist? Berk. Twerp. Idiot. I have PA ( a sero-negative form of this pestilence) and it hurts every day. God-knows what level of joint damage I have (I really cannot be bothered to find out) and I have had constant pain since 1997. (I note that sticky worked out the total number of days, I currently lack the energy to prod the buttons on my calculator, doing this is enough.) I was fortunate in that when they started taking me seriously blood tests revealed very elevated levels of ESR and CRP (inflammatory markers) so they were happy to settle on a diagnosis of some form of inflammatory arthritis. I hope the blood test he did today will check those figures - he should have put them on the forms: ESR is on the red form and CRP the green (well that's at my hospital). I have had three MRIs (I think) and they are a useful diagnostic tool. Try not to feel too downhearted - the man's a twerp, you are not imagining this, there is a problem and in due course it will be discovered. These things can take time, tho. I wish you well, Distinction Girl! DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • barbara12
    barbara12 Member Posts: 21,281
    edited 30. Nov -1, 00:00
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    Hi
    I am glad you are being sent for a second opinion, please let us know how you get on, and dont worry about what the consultant thinks, its you that matters, and the pain you feel.
    Good Luck
    Barbara x
    Love
    Barbara
  • suzygirl
    suzygirl Member Posts: 2,005
    edited 30. Nov -1, 00:00
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    Starburst, that is good that he is referring you to a centre of excellence. Did he say which hosp? Is it St Thomas? If he wasn't taking you seriously he wouldn't be referring you on. He knows that you need someone with more specialist knowledge.

    I have inflammatory arthritis and my bloods are unremarkable. I am in a lot of pain and am severely limited by my symptoms, every day.

    I hope the mri sheds some light on things. Make a note of all your symptoms, what aggravates them, any rashes etc for your appt in London.

    Take care
  • Starburst
    Starburst Member Posts: 2,546
    edited 30. Nov -1, 00:00
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    Thank you for the comforting words. Looking back, I can rationally see that he didn't imply I was a hypochondriac, I think it's just how I feel. But then I think why would I make up pain when all I want to do is socialise, go to college, get into uni, walk my dog, go back to dance classes etc? Everytime I go into my appts, I hope for "the answer" and I'm always disappointed. :roll:

    xx
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    Oh dear, what 'answer' do you want really, Starburst? Is it 'Yes, you have a form of inflammatory arthritis,' or 'No, you don't?' Both are in the middle of somewhat large minefields, methinks. Rational thinking is all well and good, but this is a very emotional subject. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Starburst
    Starburst Member Posts: 2,546
    edited 30. Nov -1, 00:00
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    I want an answer a bit like......here is the medication to take, it won't make you faint or make you vomit but it will help your symptoms.

    I'm trying to be positive. Yes, I have pain but I have good stuff in my life too and it counter-balances all the rubbish! ;)
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    Ah, that answer, hmmmmm, I struggle with that one myself. May I leave my reply until I know where I am headed? I suspect I am close to a flare and things are not that wonderful at the moment. My apologies. :oops: DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • stickywicket
    stickywicket Member Posts: 27,719
    edited 30. Nov -1, 00:00
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    Starburst, you are positive but, even if you don't have arthritis you certainly have something with very similar symptoms. I doubt there are many,if any,people on these forums who haven't, from time to time, felt that maybe they're not that bad...maybe they're just wimps....maybe...it's not as bad as they're making it out to be. I just wish I had a fiver for every time I've sat in my GP's waiting room thinking that. Arthritis fluctuates, by the day and the hour and every good GP knows that.

    Concentrate on those good things in your life but acknowledge the pain otherwise it'll come back to bite you on the bum. Hope you get an answer soon.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • Starburst
    Starburst Member Posts: 2,546
    edited 30. Nov -1, 00:00
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    Thank you all for listening to me.

    I think what worries me is that he thinks I have something as well as arthritis affecting me. He blabbed something about pain signals, which maybe is Fibromyalgia? He diagnosed me with that and then undiagnosed me when he did more tests. I am calmer tonight and more rational. I know medicine isn't really an exact science.

    x
  • tjt6768
    tjt6768 Member Posts: 12,170
    edited 30. Nov -1, 00:00
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    hi starburst, it can be a wicked waiting game this diagnosis malarkey eh? Hope you get some answers soon...
    :grin:
    e050.gifMe-Tony
    n035.gifRa-1996 -2013 RIP...
    k040.gif
    Cleo - 1996 to 2011. RIP
  • chris7
    chris7 Bots Posts: 2,696
    edited 30. Nov -1, 00:00
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    Hi Starburst

    I am listening and hoping you get a diagnosis and practical support soon. Hang in there. I leave a few hugs which I hope help a little. ((( )))
    Chris
  • caroline23red
    caroline23red Member Posts: 6
    edited 30. Nov -1, 00:00
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    Hi, know how you feel, you don't believe how you can be in so much pain. I am waiting for an MRI as the Xrays showed nothing, but some blood tests did. Bear with it, I am trying, if I get through two days without crying/feeling sorry for myself, then I consider I am doing okay. Really feel for you. Hope everythings gets sorted out for you.
    Caroline