Met with a new (to me) consultant who was brilliant. However she has queried my diagnosis of PMR (the 2nd consultant to do so) she finds it unusual that I have never had any issues with my shoulders/ upper arms and I have never had raised blood markers.
My issue has always been chronic stiffness and pain in hips and legs. She is sending me for other tests and appointments but has said that PMR is difficult to diagnosis and even more so now I have been on steroids for as long as I have. She did mention Vasculitis
No idea what the outcome will be, but I felt very confident in her approach., very thorough. It was the longest appointment I’ve ever had.
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Abbey17
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Fair enough - but PMR IS a vasculitis... You are by no means that unusual in having normal bloods. And not alone in not having had upper body symptoms. The criteria DO say, pain and stiffness in either/or hips and shoulder girdles.
I knew there was a link to Vasculitis, and she didn’t want to commit to a diagnosis until the results are ready. She’s just questioning the diagnosis based on my history. Personally I still think it’s PMR but I’m happy she’s doing different tests etc. I’ll let you know the outcome
Oh do - it's all grist to the mill! It IS good when they look to be sure but they often have this concept that all PMR cases must look the same - and of course, they don't!! It is when they force patients to reduce their pred dose to try different scans that I get annoyed. Too often that results in a good going flare - and they didn't get a decent result anyway to give a solid diagnosis.
I never had any problem with neck and shoulders at all. At diagnosis my GP, I was then in France diagnosed PMR when I said I felt like I was wearing girdle of fire round my hips. And in a small village of 4K inhabitants I was joining three others, all women and all Northern European.
It seems a lot of doctors tell people it is not PMR when it quite possibly is. 20% of people never have raised blood markers and you don’t have to have painful shoulders and hip area.
Hi, I’ve been through a similar situation, two GPs, and a Rheumatologist, decided it couldn’t be PMR, because my markers were normal, and I had pains in my feet.
Long story short, had MRI, seen Neurosurgeon, I’ve three herniated disc’s and spinal stenosis.
So I’m still on steroids, told to come off gradually, 5,4, all ok, down to 3.5, then shoulder, neck pains started, I’ve upped to 6, and it’s all ok.
So, I guess, I may have both ??
Good luck with your further tests, and , yes, it’s good to have someone who you’re comfortable with.
I had horrendous foot pain before pred - it felt as if I was walking on insoles of pebbles mixed with sharp gravel and broken glass! And as if I was wearing shoes a couple of sizes too small - or had my feet bound like they used to bind Chinese ladies' feet! Over the years I have heard a similar description from quite a few people. It al went after a couple of months on 15mg pred - has never returned. Leeds has done (but not published) a study that shows feet CAN be part of PMR. So can hands.
a gp put me on steroids for pmr and I was on them when my blood work was taken. In turn, my bloods appeared to be normal. The first rheumy was rude and would not listen to me. She told me I had fibro. Then she sent me on my way. Fast forward. I had to taper off of steroids due to compression fractures of my spine. Symptoms came back with a vengeance. Also my markers went sky high. Steroids can mask what is going on. Don't just stop taking them. Your doctor is being cautious with a diagnosis at this point
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Waiting for a diagnosis 
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PMR symptoms. Seronegative RA diagnosis.
