saw the physio today for the 3rd time about my swollen knee/pain. He’s discharged me from that service and back to the GP for injections or a scan. I’ve repeatedly said I don’t want injections without knowing what the exact problem is. What bit don’t they understand!
Every time I’ve seen the physio he’s put wrong info down on my online record. Like today I told him the pain was worse (not ‘the same’ as he put). And the other bullsh** about examining my knee and me standing on one leg etc - again all BS! The same about the red flags etc etc - nothing has ever been mentioned. Is it standard phrases they just decide to add….
Sorry for the rant, but it’s so frustrating when they don’t listen.
I won’t even talk about the times when they’ve got my records mixed up with my husbands…
Apart from all that, have a lovely Bank Holiday everyone. 😃
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Doraflora
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My doctor’s surgery managed to get a friend of mine’s records muddled up with someone who had a similar name and my friend got a confirmation letter saying she had cancer! I think my friend really was frustrated to say the least!
My mother turned up at her practice to be told she was dead!!!! There was another patient with exactly the same name and birthdate - and they'd mixed the notes up. That's why you ALWAYS check the name, DOB AND address!!!
Similar happened to hubby, but in his case the surgery had been notified by some central body, and his notes sent back and destroyed! First I knew of it was when I tried to book him an appointment and the receptionist told me he wasn’t registered, so we’d have to fill out the paperwork for a temporary resident. Luckily our GP was passing through reception and was able to get him booked in, and he later chased up what had happened and told us. So, years of medical history lost for ever. Luckily it hasn’t proved a problem.
Hubby wasn’t bothered, so didn’t pursue it. It was when our GP was very much a family doctor, and knew our recent history, plus the only medical condition hubby had then was mild asthma. I don’t know if the practice lodged any complaint.
I thought notes had to be kept for a stipulated time before being destroyed. My notes are far from complete - not sure if they treat you as "dead" if you move abroad! And no-one in the UK will be interested in my notes from Italy, some in Italian, some in German and a bit in English!!
They do… or did . I had to access my records when I had GCA - and some went back to when I was in my teens - only bits missing were when I was in Germany [and some parts of UK where no NHS GP was available] with OH and treated by HMF medics.
Yes! to your question. I was having concerning heart palpitations about 3 months ago and had an ECG at the surgery. No problems and I later decided it was a side effect of reducing to 7mg pred. daily which is when adrenals start to stutter into life so trying to see it as a good sign together with ears ringing and one or two other annoyances.
Unfortunately my husband had a stroke on April 18th and of course the stress of that was mentioned in the consultation but I thought I made it VERY clear that the palpitations started before then.
I am about to endure my annual pred. review and at least thought the adrenals struggling would give me and excuse if needed to have another year of as much pred. as I need and not have to argue the case like I did last year - when the GP said I’d been on pred. long enough (it’s been 9 years admittedly) and wanted me to come off it completely over 6 months😵🤬. Well if I thought it at all possible believe me I would.
Anyway when I looked at my medical record for the blood test results I had at the same time, I read that I’d agreed the palpitations were likely due to stress caused by my husband’s stroke. No I didn’t! Now I’ve got that conversation to have, persuade them my adrenals are struggling and please can I go on reducing very slowly and no I can’t do it in 6 months🙄
Every single repeat prescription I get for Pred has the words printed on it “reduce by 1mg a month”. Err no: it doesn’t work like that. I’ve never wanted to do that at all.
You are right. They do not get it or fully underatand it.
I honestly think I know more about PMR than my GP now!
I appreciate they need a good understanding of many things, however I was told '"you are a rare one...not seen anyone with PMR before"...so you would think they would want to know all about it and how to manage it !??
Having been on Pred for 10 months, I only discovered in July this year I should be carrying a steroid card ( provided by the medical practice) & wearing a medical alert beacelet for steroids.
Also I was not warned what was to come, what to expext ( with steroids & PMR) and realistic time scales.
Then chuck in significant delays in trying to get appointments or indeed updates via phone calls promised that never happened and it all becomes a nightmare
Had to discover everything myself from the fantastic folk on this help group.
It's a shame we cannot somehow apply collective pressure and highlight to the NHS how poorly PMR is dealt with. 😔
It's a shame we cannot somehow apply collective pressure and highlight to the NHS how poorly PMR is dealt with.
That’s what the charity does… but it has limited resources. But it does have information on it’s website and membership for professionals is free - maybe start by showing your GP this -
" I was told '"you are a rare one...not seen anyone with PMR before""
PMR is the most common cause of rheumatic symptoms in over 65s. There are a lot of us out there, and more every day. Time they caught up and prepared for the future!
We’re a bit sad, as we’ve watched all the series a couple of times over the years if there’s been nothing much on the standard channels (which is often the case)
My experience has been similar to yours. The medical training for GPs should include GCA. I wonder how many people with GCA suffer with the illness because their GP knows nothing about it and so cannot diagnose it even when it is sitting in front of them.
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Hello 
Does anyone else have problems with their tongue
Rebound headaches?
Does anyone else fee like this ? 
Has anyone else had PMR pains affect their knee joints?
