Just came home from Dr. Yesterdays blood tests perfectly normal, sedrate, protein all that he ordered normal. IHe went on to explain that even though I'm on the 10 mil of pred that if it were a true inflammatory auto immune disease it would still have to be in the abnormal range. He is adamant about saying it is not pmr or gca and now wants mri's of hips, neck and shoulders. He said he will keep me on this dose of pred for the time being, thank goodness for this but he said that I will have to go off them for good once he begins the taper again but he will wait until a definite prognosis can be made before doing so. He thinks its a degenerative problem due to old age, Im 63 and quite active and dont feel old but again, I told him my concerns with my eyes and that if all the mri's are negative then what. I am so much more confused now because not sure what to think. I mean he said he knows my pain is real, but he does not believe it to be an inflammation since all blood clear even when I told him it can still be pmr with normal blood so where do I go now. I'm having the mri's and dont know whether to pray for them to be normal or not. I appreciate any one here who can offer their opinion.
Normal blood what now?: Just came home from Dr... - PMRGCAuk
Normal blood what now?
Oh dear Shastring,
Unfortunately did think this might be the outcome. As many have said, his theory about the blood markers has been proved wrong by quite a few people on this forum.
I suppose you can only go along with his request for MRI scan, and hopefully not have too long to wait for that to happen, at least he is leaving you on 10mg of Pred which should give some protection.
Sorry can't give you anything more positive, but as we said previously, any problems then straight to local hospital emergency room.
Oh dear - time to find a doctor who knows what he's talking about - 'cos he doesn't.
20%, 1 in 5, of PMR/GCA patients can present with a normal ESR. Any patient with even an elevated ESR to start with but still on pred would be very unlikely to be showing a significantly raised ESR at this point.
Wait until he has the MRIs - they MAY show inflammation, I've just read an article by some of the top Jonnies in PMR who say that MRI is very likely to be the future of diagnosis. If not - find another doctor.
If he had told me it was degenerative disease I'd have clocked him one - I was 51. And yours came on quickly didn't it?
Tell him that if you lose any vision if it is GCA then you will sue him. As DL says - off to the ER if anything happens to your vision.
There are other options - so he must rule out all of those too:
medpagetoday.com/Rheumatolo...
HI PMRpro and thank you so much for your reply. I almost wanted to jump up and scream at him but kept my cool. I'm laughing because I did tell him if I lose my sight I will go after the Dr's that dismissed all I was telling them and he didnt like that to much. I also told him I will pacify him and have all the tests he's ordering. I even brought the printed material that I got here, the symposium review and offered him a set of the copies which of course he declined saying I know all there is to know about pmr and gca. I then said well maybe not enough if you don't follow these guidelines. Needless to say he looked me and my husband in the eye and said listen, I know your pain is real but we must get to the root of it all. I laughed and said ok but at what cost, then I just said lets get all tests ordered and lets hope I get results quick. I will keep you posted!
Hi.......please keep us posted & good luck hope you get a proper result.
Peggy 😀
Hi Peggy and thank you. Anxiously awaiting Mari which are scheduled for April 22 and hopefully results. Not sure how many more tests can be done. This Dr is talk about injections and I do not agree at all. I think the Maris will be negative and then not sure what he'll say. Will keep posting .
Shastring
"I know all there is to know about pmr and gca." - and therein actually lies the problem all too often.
I'm pleased to hear he wants to get to the root of it and believes your pain is real - and even more pleased he's willing to do MRIs. But please don't tell me the ESR/CRP HAVE TO BE IN THE NORMAL RANGE. They don't. So just say," I personally am not convinced it is PMR/GCA and we'll do tests to find out what it could be". Then you won't upset the patient or look a right numpty when you can't identify anything else - and since the patient responds nicely to a moderate dose of pred and that is the only thing that works you are left with a "diagnosis of exclusion" of PMR.
Hi PMRpro,
I may have said it wrong but what he said was that since my blood test were all normal it could NOT be pmr or gca. I then said they are normal because I was never tested before I went on the pred, maybe they were high before I began the pred and he adamantly said that even on the pred the blood would show some elevation and mine did not. He did say that while I have all of the classic pmr symptoms he doubts it's that. Thank you so much for replying and helping me to understand. I agree with all you state.
shastring
I’ve not hear that one “clocked him one” for 40 years or more! 😀😀
I fear I would be old fashioned in speach if ever I do return to England.
Hi Shastring, I have the same problem as you with Rhuemy was on 20mg of steroids diagnosed PMR after 7mths of awful pain by a different Rheumy who my nurse got to look at me as mine was on holiday, brilliant after 3days completely pain free, went back 1mth later my Rheumy was not happy, don't think he liked it as I was diagnosed by another Rheumy, so after 2mths he said I had to start reducing by 5mg a time got to 10mg was I in pain so went back to 20mg, pain gone, in January I had Cushing syndrome he didn't tell me what it was, but had to reduce again got to 10mg again, not quite so bad but in Febuary went to see him, asked if I had vasculitis as well because I have symptoms of that as well and so tired and exhausted, he turned round and said "I knew you were going to ask me that, and no you haven't got vasculitis and you haven't got PMR either the best thing you can do is eat a proper diet loose some weight then you won't be so tired" well I could off thumped him one especially as my inflammation markers were still raised, we know how we feel in our own bodies with the pain, I really think some Rheumies think they are playing god with our lives, when I go back to see my nurse I'm going to complain about him and ask her if I can see the Rheumy again who diagnosed me with PMR, you know how you feel so don't give up, not sure where you live I live in Wimborne Dorset attend Christchurch hospital in Bournemouth, have been given good Rheumys names from this site, don't be to disspondant we will get there in the end, like you just want an answer.Val
Hi valrene, yes you have similar problems like me and yes I agree these Dr.s feel like they are so sure of themselves when we know our aches and pains. I live in the us, Florida so thing a bit different here with health care. My insurance is very good, allows me to get right in to see any dr. I prefer so no problems there but most do not really listen to you, they do every test possible and hopefully we get the correct diagnosis. Good look to you and keep us posted and hopefully we will all get better!
Shastring
Wow! My immediate reaction was: find another doctor, but get the MRI first.
However, others have said it in a more considered way, so I'm just adding my two cents worth 
Hi there , how did all that end up.? My mum is in a very similar position now.
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