Hi all my husband Ian went to see rheummy specialist today , she said he hasnt got pmr now and he didnt have it 8 years ago even though he had pmr symptoms for months 8 years ago and within 48 hrs of taking prednisolone he has been pain free for 8 years up until now , she said there is no way on earth anyone could get pmr at the age of 46 , he is now 54 and she said he is still to young to get it ,she will not even let him try 1 course of pred instead she offered another blood test at £55 after paying £185 for 40 min consultation he came out with nothing ,but she doesnt know what it is ,but its not pmr . On arrrival at private clinic noticed the two carparks and surrounding area where full ,most people where doing drop off as there was nowhere to park , so from what i can gather private healthcare has never been in better shape ,as a lot of us have to wait months on end for an nhs appointment private heath doing a roaring trade, so Ian has got to wait now for his nhs hospital appointment to see if they can figure out what hes got, absolute joke ,work all your life pay in ,when you need them ,they fob you off
why dont specialists listen: Hi all my husband Ian... - PMRGCAuk
why dont specialists listen
I've got the tee shirt 👍
Why did your husband have to go privately? Couldn't he talk to a GP?
1 it is so hard to get an appointment, 2 it might be on the telephone 3 you get 8 mins, 4you have to spend half of it hearing about how hard it is for a Dr today!
I know the feeling. I THINK I’ve rotator cuff damage. Had a telephone conversation with my GP who thought so too and referred me to MSK clinic. Have been waiting months for an appointment but my GP says he can’t treat me now I’m referred (even though the MSK clinic can’t give me an appointment and don’t know when they’ll be able to). I’m in a lot of pain, especially at night when trying to sleep. Upshot is I’ve made a private appointment to see someone but even then I’ve a month to wait - so busy! Got to pay £190 just for consultation too!
hello, I am deeply sorry for you. Circle MSK are there to generate income for their share holders and jobs for their staff. I was in sheer agony for two years being passed round to various departments with months and months of waiting for appointment, and never getting through on the phone. I finally saw a physio who said I'd got PMR, ref me to their rheumy 2 weeks later who said I didn't. have it. in despair and literally crippled in agony I could hardly get out of bed and cried to lift a tea spoon shoulders and hips locked in pain so badly, I paid £250, went private. diagnosed with PMR. put on Pred, two days later I was skipping round the garden.... now under good NHS care system. Circle MSK is a privatised company and wasted 2 years of my life, in cruel agony and tears, while no one listened or helped me. It is an utter disgrace! just google feedback, then invest in a private consultation. I pray you will get help soon, keep safe.
Thanks for your reply. The MSK clinic I was referring to is run by the NHS. I think that’s why it’s almost impossible to get an appointment. Glad you’re now skipping around the garden - long may it continue😊🤞
sounds like you in same boat as my husband, so sorry for you, i really hope going private works for you but it didnt for my husband as specialist was adamant you could not get pmr under the age of 55 hope you get a more open minded specialist
absolute disgrace! is there any way you can get a private second opinion? I hope you get real good sound help soon.
Short answer...because they think they know it all...or at least some do! Good ones listen, and discuss, but they do seem to be thin on the ground.
i know just hope its not to long before we find one that will give him pred
She is obviously a rather blinkered lady! Otherwise - what DL said!
We do try to guide people who want to go privately towards someone we know who treats the patient and not an incorrectly remembered textbook description. But you have to ask and be prepared to travel a bit depending on where you live. It should be brought to her notice that NICE considers that over 40 is the age criterion for PMR and in the rest of the world most experts agree on over 50.
The private hospital carpark was overrun because almost all private hospitals have been taken over by the government to provide non-Covid treatment. And the specialists there are all also the same specialists you would see in the NHS - had you seen her in the NHS she'd have been just as bad.
Just looked at NICE - and they seem to have reverted to 50s. Unless you still have anything that says differently - can't find anything in my saved information.
I can't see it - not allowed as I'm not in the UK. I have always suspected it was a typo!! And I bet someone has complained 
Wonder who??
Oh dear what a pain! I’ve just seen a NHS rheumatologist who seems hell bent on proving to me I haven’t had PMR for the last 6 years!!!! Despite being diagnosed with fibromyalgia a few years before waking up one morning and hardly being able to move but within 8 hrs of taking prednisolone I was fine. Every time I try to reduce the steroids the pain gets so bad I have to revert back. Started on 15mg aged 58 now on 14mg aged 64. This rheumatologist is telling me it’s the fibromyalgia but the rheumatologist who was treating me (retired now) was convinced it was. The new one is talking about taking me off steroids😱 Yes I want to come off them but I also want to function. Like you have experienced I’m not sure mine was really listening, seems he was spending more time looking at the computer. It seems a lonely place when you have PMR which is why this group is so good.
It may not be PMR - but it isn't fibro if it responds to pred! Where are you in the UK?
I’m in Cornwall near Truro
Oh dear - not easy to get to see someone else is it!
I guess I’ll have to wait and see what he says about the blood tests he had done and the ultrasound scan he’s organising. I don’t think anything is rushed though as I just had the next telephone consultation appointment come through for March 2021🤪 I could pay to go private but my last rheumatologist recommended the chap I’m seeing😂😂😂🤪 You gotta laugh.
we live on the wirral it is defo pmr he had it 8 years ago they took months to diagnose then one doctor, who has since left, had a brainwave and came up with pmr gave him pred he had no pain within 24 hrs and within 48hrs he was practically back to normal, and the exact same thing is happening now ,but he cannot get a doc to even try him on them. If they tried them and they didnt work fair enough ,but they wont give him them at all.
Interested in this - why do you think so many rheumies say 'it's not pmr'? What's the difference in symptoms with pmr and fibromyalgia? (If that's what they think it is...) And how do they treat fibromyalgia?I've got a first appt (phone) with rheumie next week....scary!
Fibro is a very useful get-out and they can say they can't do much and dismiss the patient. They may offer pregabalin or gabapentin I think. To be fair, there can be a lot of overlap, your get trigger points in myofascial pain syndrome which is more common alongside PMR, may even be part of PMR in some cases. But it isn't something English-speaking healthcare knows a lot about - the Germanic countries are very aware of it.But there is one major difference: PMR is an inflammatory disorder, lucky patients have raised ESR and/or CRP and that makes it clear. Fibro is different, doesn't have any inflammation and doesn't respond to pred. Don't care what Prof Daspupta said yesterday!
That's the million dollar question!........arrogance, and not listening to the patient....had 9 years of it till I found a Rheumy that listenedI wish you well in this battle.......
The reason the private hospitals are full is that the NHS have taken them over for NHS patients again, because of Covid. I needed a hip replacement at the beginning of the year and decided to go privately this time. The hospital was handed over totally to the NHS in March so I had to wait until September. When I was there the hospital was packed, plus the car park, with NHS patients. I was lucky getting in for my hip op in September. I had both the surgeon’s appointment over the phone and my pre med as well. Your husband may have been better talking to the GP over the phone and just asked for pred for a one week test.
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