I received this letter this morning after my appointment 10 days ago. She was a registrar who had just come from Luton and so was familiar and in agreement with the slow taper I was doing. The rest is a mystery. She never asked me how I felt, I am doing DL taper so NOT alternate days at all. Active life made me laugh out loud and denying pain, well I wasn't actually asked. No I don't have joint pain, but I do have severe muscle issues, headaches and sight issues, daily.
I was just grateful I wasn't threatened with the TCZ not working like last time, so hey, you can't have everything.
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Sophiestree
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hard for you. difficult choice whether to put yourself out to correct and mildly admonish or just to let it go. do bear in mind that this is on record so if you are happy to leave it ok. just a thought
Funny, when I first being investigated I insisted on having copies of everything plus scans, but it all tails off after a while when you have lost impetus and feel rubbish
Sophistree, you are entitled to ask to have written mistakes rectified: your health records should be accurate so that any doctor or nurse treating you knows exactly what your issues are.
I know you're right but right now I have zero energy. I might go armed for my next appt to clear some of these things up, but I kind of like it when they just leave me to it and don't interfere.
87 comments is a lot to get thru, so forgive me if this is a repeat. Wasn''t sure if Suffererc was making that comment in jest or not, but maybe that is what happened. Seems awfully off. If nothing else, maybe that's a good way to set up your complaint - "I noticed my doctor's notes were really off. Is there a chance that my notes could have been switched with someone else's?"
I went to the local orthopaedic hospital regarding a fatty lump on my arm. In my letter the consultant said I had fibromyalgia. When I went back to her a year later, not realising it was the same person I made a comment about it and did get an apology. I would have thought there they would know there was a difference between fibromyalgia and PMR!
Both end in algia.....poor dears can't work that one o ut!...
Seriously though, over the years I have often had to stress to people who have commented , it's very common what you have....I say it's Polymyalgia, not Fibromyalgia!....then they ask so what's the difference?..😱
My rheumy's letters are always absolutely verbatim what we discusssed. One time I was baking cookies when she called, and that went in the letter! I'm convinced the meetings and telephone calls are recorded, so I have to be on my best behaviour and not say anything that might get me in trouble. So far I've managed because for one thing our appointments are very short. Unlike your rheumy, one thing that mine never refers to in her letters is my mention of this forum. She doesn't approve of discussing GCA with non- medics, but never seems to have much to offer herself in terms of advice and information. Information seems to be a one way traffice from me to her. But I sympathise with your frustration over these probably standard format cut and paste letters. So slapdash and it must make you feel that you don't matter and aren't being listened to. I would bring it up when you next speak, or put it in a letter to the department so that the consultant sees it.
I have yet to see my 'actual' consultant, if I ever do, it will be 2 years in October and I don't have an appointment scheduled now until after that, and that I believe will be with the Rheumatology nurse!
I used to get stressed out with frustration or anger after speaking to my rheumy, and it did I think cause my first flare. Now I realise many of us share the same substandard treatment in one way or another, and there's little we can do about it. So now I take whatever I can get from my rheumy - like regular blood tests - and expect nothing much else in terms of interest or GCA experience. My first ever appointment was with a registrar rheumy who typed away like a secretary throughout the entire appointment. The next was with a registrar whose attitude was keep quiet, don't ask questions and do as you're told. My current rheumy is a consultant who is at least polite and courteous, so I'm thankful for small mercies. If you can bring yourself to be philosophical about it all, you'll feel a lot better.
Hi Pinks33.. .in my last appt in June, I challenged my rheumy on his approach and dismissiveness, very politely, and there have been no notes at all !! I wonder why......😮
I think they must do cut and pastes. It us a bit worrying as my GP has had several letters from consultants which are totally wrong. One said I was not on any long term medication, (what about the pred?) another gave information about my parents which was wrong and the consultant had never been told anything about them anyway. There are several others.
I don’t know why my parents were mentioned. I mentioned it to my GP and I got the impression that he thought the consultant had muddled my up with someone else. He said that he would write to the consultant and I never heard the outcome!
I noticed recently that my chart now says I have arthritis in every joint. I have never complained about my joints, not one!! They Just refuse to understand what a r t e r i t i s means😫.Also someone said I have a behavioral adjustment syndrome, probably caught me in one of my cranky days over stupidity!
I recently checked my health records held by the surgery. They (the surgery) are usually excellent, but a few years back I was recorded as a smoker and 'advice given'. Not a smoker and I suspect it was when some of the targets stuff was happening. I wrote to have it amended, and it was done so immediately with a text confirming it. I asked for letter to be kept on record.
I was in pre assessment for total right knee replacement. The anaesthetist wrote to cardiologist asking for ok for me to come off Eliquis for 3 days while I had my left hip replaced. Cardiologist replied it was ok as I had severe arthritis in my right hip and having it replaced should increase my quality of life. Good thing my orthopaedic surgeon knew which joint to replace.
I had a very similar letter a while ago, basically it had said the opposite to what I had told my Rheumatologist, you couldn't make it up.!.......or could you 🙄
You have to respect the Dr in the first place to build up a trust, personally I think Rheumatologist s are in a different world in our wonderful health service ! Sadly in my part of the world they seem to be few and very far between ! That's why I'm not involving them in any of my future plans, just me and my DR from now on .
My rheumatologist asks me every time if I check my breasts. I was a bit bemused but just answered the unusual question. I finally realised why. My mother had Paget’s disease of the bone, an autoimmune disease. There is also Paget’s disease of the breast, a cancer. It had been recorded wrongly! So all my consultants thought I had cancer. My last consultant letter said, no pain on palpating, he didn’t lay a hand on me. My spine surgeon dictates while I am in the room, I have to correct him regularly during the dictation but at least I get the chance. Doesn’t create confidence 🙄
Even better… our daughter aged 9 (years ago) Had a Brody’s abscess. operated and discharged with letter to Dr. Dr called same day to check her appendix removal 😂🤣😂🤣😂
I saw my rheumy yesterday; last minute appointment over 6 months since the last one. I saw the registrar. He might have been a carbon copy of the consultant in terms of his approach and attitude. I'm tapering down to 7mg soon and when he said to continue tapering by 1mg every 6 weeks I queried it by giving the examples from this forum and the 10% rule and shouldn't it be half a mg? He got a bit cross and said no, it's 1mg and that's why he's here because he's qualified to do this job.
I mentioned the trapezius tender point and he did examine me but then said its got nothing to do with him.
I also asked him to reiterate on the letter that I need 1mg pred as my surgery won't prescribe them without a GP consultation (appointments take 3 weeks) because my prescription hasn't been updated from the 5mg pred when I was on a higher dose. He refused saying it was in the last letter. - which it was, but our GP surgery takes several months to read and upload letters onto your notes.
Hubby also had a rheumy appointment yesterday at a different hospital. They had not received his notes from the GP surgery so he had to try to remember his history. He was then, after 2 and a half hours, sent for a blood test but the phlebotomy unit was closing for lunch for an hour so he gave up and came home.
Anyway, I feel I have to follow his orders re the 1mg tapers. All he seemed to be interested in was the GCA not the PMR. He said I should expect aches and pains to come back as I taper, and to take paracetamol as long as I don't get any headaches or jaw claudication.
I wasn’t rude but I told one person it is like Chinese whispers what you have just reported is not correct. I feel like writing all my symptoms from the beginning and asking them to correct. Problem is I am usually too tired to bother.
Well I hate to make this post any longer than it is, but, I have this minute received a phone call from the Rheumatology department asking to make a Consultant phone call appt re a TCZ review due to my blood results from 10 days ago at 9.00 on Monday. So inflammation markers may well have been normal as per the letter, but looks like something else isn't. I think I'll try the nurses today at 2.00 when you can ring them and see what is going on.
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Another Rheumi with an attitude problem..or maybe it's just a cultural barrier....
Update- showing articles to rheumy
Rheumatology visit, Monday.....BIG taper 😨😱
Another flare, this time post-surgery
