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Pre Diagnosis

Posted , 5 users are following.

ailsa29683
ailsa29683

HI there...as you can see I'm new to the discussions forum. After having aches and pains over the past few months, I've had a blood test to determine inflammation. I'd be interested in any comments re pre-diagnosis: what were you experiencing and how it was dealt with my the medics. I found out about PMR by searching for blood tests for inflammation and the symptoms do tally with mine. In a way I'm hoping something does show up from my blood test because I feel as though I'm not been taken seriously. Thank you.

1 like, 24 replies

24 Replies

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  • EileenH
    EileenH ailsa29683

    Posted

    Not a lot to add to that for the moment except to say that there are several causes of the symptoms that we call PMR - it isn't the real disease but the outward expression of some underlying cause. In the case of the PMR meant in this forum it is an autoimmune disorder that makes your body's immune system attack itself by mistake which leads to inflammation of various tissues, mainly blood vessels and that affects the blood supply. 

    If the doctor does think it is PMR and there are no signs of the other causes in the blood tests he should have ordered he should put you onto prednisolone at a dose of about 15 or 20mg/day, to be taken in one dose as early in the morning as is reasonable. If it is this PMR then you should get a big improvement in the stiffness and pain within a few days, not all will disappear immediately, some may never go until the PMR goes into remission when the autoimmune disorder burns itself out. This usually does happen but it could be anything from 18 months or so to several years. However, you should very very much better. 

    But be warned - it does not mean you are cured, there is no cure, PMR can only be managed and it is also up to you to do your bit of management. Just because you feel better don't rush around catching up on all the things you couldn't do. Your muscles remain intolerant of exercise and you must learn to pace yourself and not get over tired - because you won't get the usual warning signs when exercising that you are doing to much. Stop BEFORE you are tired and always plan rest days between days where you have to do a bit much.

    But this is theory so far - you haven't been diagnosed yet. You are welcome anytime to ask questions - and there will be plenty!

    • erika59785
      erika59785 EileenH

      Posted

      So well said, Eileen!  These reminders are very important NOT to overdo and pace oneself.  I learnt this lesson just a few days ago, and now I have to backtrack and start all over.
    • erika59785
      erika59785 EileenH

      Posted

      Eileen, sorry about the THREE replies....my computer acts up at times.

      Erika

    • EileenH
      EileenH erika59785

      Posted

      If you click on the flag that says "repor"t at the bottom of your post there is an option "Duplicate post" - click that and it will be deleted for you. You can ask for any post of your own to be deleted if you change you mind about what you said and want to remove it. It's the next best option to an edit facility. Obviously you also use it report spam/trolling and so on...
    • jennie34011
      jennie34011 EileenH

      Posted

      I appreciate all you have said here Eileen.

      At the moment, I'm just so happy to get some relief. Not thinking that the problem is still there, but masked!

    • EileenH
      EileenH jennie34011

      Posted

      Not masked Jennie - managed! Much more positive way to look at it. You can't ignore it, it will bite back if you try to abuse it, but as long as you take the pred and learn to know what you can and can't do comfortably you will have a pretty normal quality of life. Often what makes it feel worse is that you were very active and busy beforehand and it stops you doing what you did then - that was the case for many of us. You will find ways round things and new ways of doing things - and new friends and new hobbies. It isn't all bad :-)
  • ailsa29683
    ailsa29683

    Posted

    Hi all....my blood tests came back as all normal - so am going back to GP as still have symptoms. Now I'm wondering if it's MS possibly or is it all in my head.

    • EileenH
      EileenH ailsa29683

      Posted

      About 1 in 5 patients with PMR does NOT have raised ESR and CRP - so having "normal" values for these doesn't necessarily rule out PMR. 

      Follow this link:

      https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316

      and in the first post you will find a link to a paper aimed at GPs to help them diagnose and manage PMR. Your GP may be interested in their technique for ruling out the likelihood of PMR. A jump from suspecting you may have PMR to having MS is rather drastic though.

       

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