Feeling depressed, so excuse me venting!

[Toods]

Have just been seen at a complex MSK clinic. My doctor told me I had inflammation markers, but according to the consultant I just saw, I haven’t. I went through all my symptoms, and apparently he doesn’t think it’s PMR as I don’t have inflammation markers, and I have too much pain.....!!!! He is now sending me for an MRI. Heaven only knows what the wait will be for that. He said he doesn’t like to prescribe steroids if there are not high inflammation markers, so the pain will just go on. ...... Depressing. Apologies for my rant!

[DorsetLady PMRGCAuk volunteer]

Oh, for heavens sake where do they get some of their ideas from.

High inflammation markers are not always present....do you happen to know what they were? Obviously high enough for GP to be worried.

Too much pain? How does he know what the level of pain should be?

As for prescribing steroids, why are they so frightened of them - a short course would do no harm, but might do a lot of good!

No wonder you’re depressed- and ranting.

All you can do is monitor your symptoms and return to GP if they get worse - and maybe ask for a second opinion ( privately if necessary or if you can). ....and what for MRI I guess!

[PMRpro Ambassador]

Was it a doctor/rheumatologist or a generic "musculoskeletal specialist"?

I would so like to introduce these so-called experts who don't know the basics of the disease to some of my friends - one spent over a year bed-bound and only able to attend hospital appointments by ambulance before PMR turned into GCA. Too much pain!!!!!

Up to 1 in 5 patients with PMR do not have markers that are outside the "normal range" - mine were never over 20 for ESR, CRP never budged, but my ESR should be low single figures, not the 16-18 they ran at.

Wonder what he'd have said had you told him suicide seemed quite appealing because of the pain? I think you have been quite restrained to be honest.

[Toods in reply to PMRpro]

Thank you, Dorsetlady and PMRpro.... Your support keeps me going! At the moment I feel like crying as it’s so frustrating. I had hoped for some answers today, but what is clear from the many posts on this forum is that it very much comes down to luck who you see. I shall wait for the MRI and results of the tests, but if I still get no joy I shall be asking the forum if anyone can recommend a good private specialist in Oxfordshire!! I know I’m not alone in getting diagnosed, but that really doesn’t help when the pain wakes you up at night and you can’t get out of bed in the morning. He did say I carry a gene which predisposes me to an inflammatory condition. Interesting...

[PMRpro Ambassador in reply to Toods]

It MIGHT be ankylosing spondylitis that he means - but he should have explained that. Do you have sacroiliac pain?

webmd.com/arthritis/underst....

creakyjoints.org/diagnosis/...

It can present looking just like PMR - as can several of the spondyloarthropathies. It causes night time pain earlier in the night than PMR tends to - but is characteristic in the pain improving once you can get moving. There are other arthritides in the group.

But the good thing is that he is looking - but so did the guy I saw because whatever it was I had he didn't want it to be PMR! Despite an 80% improvement in symptoms in under 6 hours in response to 15mg.

Oh - and there are much better drugs for them!

[Toods in reply to PMRpro]

Just read your attachments, and thinking about it, that seems to have been what is on his mind as he was asking about red eyes, psoriasis etc... Neither of which I've had. I had back surgery for a slipped disc 4 years ago and my lower back is about the only part of me that doesn't hurt!!! My main pain is neck, shoulders, upper arms, hips and buttocks. Recently I have started getting throbbing in my wrists, hands, knees and calves. I have an almost constant low grade headache from my neck pain and over the last week have sometimes had a stabbing/throbbing pain where my right ear meets my jaw, but not when I eat so that could just be tension from all this pain and waiting!!

[PMRpro Ambassador in reply to Toods]

Mine seemed to think it was an insult I wouldn't admit to psoriasis! But that an aunt had had it was good enough. They often do tend to get an idea and fixate on it. But in the meantime he could have tried a short taper of pred and it wouldn't have affected the MRI as far as I know. Mine did, 2 weeks each of 15/10/5 - fitted PMR nicely: pain gone in hours and returned in same time scale after missing the first 5mg tablet. But that wasn't good enough, couldn't be PMR because he didn't think it was.

[Toods in reply to PMRpro]

Scary, isn't it, when they are the professionals! And I'm not very good at being forceful and saying what I've read or heard as I know they think that's being disrespectful to their years of training.... Tricky, but I can see a time coming where I shall reach the end of my patience.

[PMRpro Ambassador in reply to Toods]

We have to wait and see I'm afraid - and it IS possible he is right. But he needn't have been so uncaring.

[tangocharlie in reply to PMRpro]

Even the great SM insisted on a diagnosis of psoriatic arthritis in 2015 even though I protested I'd never had psoriasis or the other symptoms in the leaflet like heel pain and swollen fingers, all because I 'was too young to have PMR'. Rheumatologists have done me more harm than the PMR itself. Luckily you're here to learn them as we say in Yorkshire!

[PMRpro Ambassador in reply to tangocharlie]

The geezer I saw at Bishop Auckland was soooo keen it was NOT PMR - and I refuse to believe that 15mg pred would have achieved what it did in under 6 hours with anything else. Now he may well have been right given the journey - but I think it is one of the variations.

[tangocharlie in reply to PMRpro]

I'm beginning to think that 'our' PMR ie long lasting, is actually the normal one, and the version doctors think is normal and goes away in 2 years is rare based on textbooks written hundreds of years ago and based on a few men as women would have been ignored and just told it was old age

[PMRpro Ambassador in reply to tangocharlie]

"Normal" - or maybe better "average", I think is 4-6 years. But I'll lay odds that if they asked enough of us you would get a lovely bell-shaped curve with the peak at about 4.5 to 5 years. Their studies never have a big enough population - Matteson's work came closer to reality but was still biased to a population that had enough medical insurance to register.

[Toods in reply to PMRpro]

And, by the way, thank you so much for taking the time to send me the info about SA.

[SnazzyD]

It’s all been said, so I’ll just add, what a twerp!

[Toods in reply to SnazzyD]

Thanks!! Appreciate your support 😊

[Longtimer in reply to SnazzyD]

That`s polite, won`t print what I think.....trouble is there are so many out there like him.....it`s not just right!!.....

[piglette]

The pain I had before being diagnosed was excruciating. I could hardly get out of bed and gave up dressing in the end. I still think how awful it was. Why on earth do they think that you have too much pain for PMR?

[Toods in reply to piglette]

I don't know!! 😢😢

[HeronNS]

Oh dear, I'm so sorry. I'll only add one thing, you do know if you have any visual symptoms you must go to Emergency asap?

I was told my inflammation markers were "normal" later amended to "normal for my age|". In fact they were elevated although not enormously so, and like you I couldbarely get out of bed and was about ready to give up driving as I couldn't turn my head properly. Fortunately a new doctor diagnosed me instantly.

[Toods in reply to HeronNS]

Thanks for the reminder.... I will certainly bear that in mind!

Like you, I find turning my head when driving very painful. I really feel that so much depends on seeing someone sympathetic to the condition. Luck of the draw sadly. I just have to hope that all these tests will eventually lead to some sort of diagnosis and treatment programme.

As always, many thanks for all the advice and support from you all!

[Toods in reply to Toods]

Just read up some more on As and I can see that my history and some of my symptoms would lead him to that thought. It will be interesting to see what the results of the MRI are. Whatever, I just would love some answers and some sort of treatment plan!