Rheumatology letter this morning: I received this... - PMRGCAuk

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Rheumatology letter this morning

Sophiestree profile image
88 Replies

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.

88 Replies
DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Rose tinted spectacles on her behalf... and making assumptions...say no more. 😊

Sophiestree profile image
Sophiestree in reply to DorsetLady

She was young! 😀

cycli profile image
cycli in reply to Sophiestree

no excuse for making up a report. hear what they want and make up what they would prefer you said

Sophiestree profile image
Sophiestree in reply to cycli

yes, but they have got so many things wrong on my letters I have given up now.

cycli profile image
cycli in reply to Sophiestree

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

Sophiestree profile image
Sophiestree in reply to cycli

I dread to think what is on record

cycli profile image
cycli in reply to Sophiestree

ask for all reports. They have to show you. If it is on your record you are entitled.

Sophiestree profile image
Sophiestree in reply to cycli

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

Dad2Cue profile image
Dad2Cue in reply to Sophiestree

My visit summary letters were like that. Funny how there were many sentences that started with "Patient reports ..." then the rest is made up information. Maybe someone else reported it ... I don't know.

The gist of the summary letters were reasonably accurate but most of the content was copy and pasted from prior visits.

I would find problems that I wasn't aware of. I would ask my doctor when those problems developed because I wasn't aware of those problems. Sometimes it was confirmed that I had the problem which was news to me. Sometimes the problem went away before my next visit.

Sophiestree profile image
Sophiestree in reply to Dad2Cue

Ha! Clever to ask when they arose those!

123-go profile image
123-go in reply to Sophiestree

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.

Sophiestree profile image
Sophiestree in reply to 123-go

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.

123-go profile image
123-go in reply to Sophiestree

It's difficult when you are under par but if you can do this when you feel a little better it would be for the best. Take care 💐

Dad2Cue profile image
Dad2Cue in reply to Sophiestree

"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."

I wouldn't worry about it too much. It isn't really worth the effort to correct the little things. Your medical history is important but as long as you are a good historian, I wouldn't worry about the little things.

I know people think every part of their personal medical history is important but it isn't from a healthcare provider's viewpoint. The past is the past however, the present is far more important. Old medical records are somewhat like old photos that nobody can recall where the photo was taken or who the people were in the photo.

I always felt that every visit was a new chapter of a book. It might be helpful to read all the earlier chapters but rarely is that done in medicine ... there just isn't enough time.

The thing that is very important is to build up a relationship with one doctor that you trust and not switch doctors on a whim. Continuity of care is very important.

Viv54 profile image
Viv54 in reply to Dad2Cue

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 .

Suffererc profile image
Suffererc in reply to Viv54

I found the Rheumatologist rude and patronising. I had a telecom with one and he told me to look it up on the net

Viv54 profile image
Viv54 in reply to Suffererc

I'm not surprised😟

Suffererc profile image
Suffererc in reply to Sophiestree

I think I would correct them ‘nicely’

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Sophiestree

No excuse -she should still listen and recall what was actually said…

Sophiestree profile image
Sophiestree in reply to DorsetLady

I don't think I have had one that is accurate to be fair, regardless of the department

Uglow profile image
Uglow in reply to DorsetLady

Here here

Suffererc profile image
Suffererc in reply to Sophiestree

Says it all. Someone else obviously got comments meant for you 😊

winfong profile image
winfong in reply to Suffererc

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?"

Suffererc profile image
Suffererc in reply to winfong

It is funny now, but wasn’t at the time 😂

Koalajane profile image
Koalajane

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!

Longtimer profile image
Longtimer in reply to Koalajane

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?..😱

Sharitone profile image
Sharitone in reply to Longtimer

I wonder what they make of nostalgia?

PMRpro profile image
PMRproAmbassador in reply to Sharitone

😂

Sophiestree profile image
Sophiestree in reply to Sharitone

Brilliant

Longtimer profile image
Longtimer in reply to Sharitone

Now you've started something!

Suffererc profile image
Suffererc in reply to Sharitone

🤣😂🤣😂

Sophiestree profile image
Sophiestree in reply to Koalajane

🙄

PMRpro profile image
PMRproAmbassador

Shakes head sadly ...

Thank goodness for our system - you get the letter before you leave the room! Even in the ED!

Longtimer profile image
Longtimer in reply to PMRpro

Stop showing off and making us jealous....mind you I'm not complaining.....

Got Newswire today, saw Max's face without a mask for a change!.....last time was when we went on Zoom....

PMRpro profile image
PMRproAmbassador in reply to Longtimer

:)

Sophiestree profile image
Sophiestree in reply to PMRpro

And do you ever have the need to correct it?

PMRpro profile image
PMRproAmbassador in reply to Sophiestree

Haven't yet for me. OH's had some moments - but it was one particular female and she won't be allowed near me if I am conscious!!!!

Sophiestree profile image
Sophiestree in reply to PMRpro

😂😂

Longtimer profile image
Longtimer in reply to Sophiestree

They like people with no knowledge so they can spout what they like, and be in awe of them!!!......as if....

Sophiestree profile image
Sophiestree in reply to Longtimer

And can be very irritated when they see you do have a little knowledge at least.One asked me how I knew about IL-6

Didn't like to say PMRPro

🤣

Longtimer profile image
Longtimer in reply to Sophiestree

Exactly...

Lonsdalelass profile image
Lonsdalelass in reply to Sophiestree

😅🤣

Telian profile image
Telian in reply to PMRpro

Dr Mackie’s not bad - letter comes via post within three days of consultation- plus she is in between secretaries.

pinks33 profile image
pinks33

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.

Sophiestree profile image
Sophiestree in reply to pinks33

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!

pinks33 profile image
pinks33 in reply to Sophiestree

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.

Sophiestree profile image
Sophiestree in reply to pinks33

Exactly. I need to pick my battles when I have the energy. Zero energy at the moment so in the grand scheme of things as they say....

Temoral profile image
Temoral in reply to pinks33

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......😮

pinks33 profile image
pinks33 in reply to Temoral

Notes are obviously selective!

Sophiestree profile image
Sophiestree in reply to Temoral

Brave!

123-go profile image
123-go in reply to pinks33

Definitely the latter.

piglette profile image
piglette

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.

Sophiestree profile image
Sophiestree in reply to piglette

Think you might have topped me on that one. Your parents???

piglette profile image
piglette in reply to Sophiestree

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!

pinks33 profile image
pinks33 in reply to piglette

Do you need a degree in creative writing to become a consultant?

PMRpro profile image
PMRproAmbassador in reply to pinks33

There is an article in the Guardian today about someone who did medicine at age 30+ and left after 10 years - to be a writer ...

Sophiestree profile image
Sophiestree in reply to PMRpro

Brilliant so maybe the answer to pinks33 is yes!!

pinks33 profile image
pinks33 in reply to PMRpro

A good grounding for his new career!

PMRpro profile image
PMRproAmbassador in reply to pinks33

Her ... Methinks she should have done more research - I fear I feel it was rather a waste of taxpayers money!

Sophiestree profile image
Sophiestree in reply to PMRpro

I 100% agree, my cousin did that, qualified, got married, and never worked. So wrong.

MrsNails profile image
MrsNailsPMRGCAuk volunteer in reply to piglette

Believe me - it’s not always the Consultants but bad Secretary’s - l’ve seen some corkers in my time….

piglette profile image
piglette in reply to MrsNails

I agree, but I think the consultants win!

Longtimer profile image
Longtimer in reply to piglette

That proves they make it up as they go along....

piglette profile image
piglette in reply to Longtimer

Spot on

Ronzy profile image
Ronzy

SHE SHE SHE what a discus discussing report I’ll see if I can did up my last one it was lovely

forwardmotion profile image
forwardmotion

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!

Sophiestree profile image
Sophiestree in reply to forwardmotion

Do you think we all have behavioural adjustment syndrome 😉

MiloCollie profile image
MiloCollie in reply to Sophiestree

Absolutely!!!!

herdysheep profile image
herdysheep

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.

Sophiestree profile image
Sophiestree in reply to herdysheep

😱

ZatMas profile image
ZatMas

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.

Viv54 profile image
Viv54

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 🙄

PMRpro profile image
PMRproAmbassador in reply to Viv54

They obviously did ...

Nightingales profile image
Nightingales

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 🙄

Sophiestree profile image
Sophiestree in reply to Nightingales

Wow

Suffererc profile image
Suffererc

Changing to opticians. My son aged 13 was asked if he had brought his glasses with him……. He was wearing them 😂🤣😂🤣😂

Sophiestree profile image
Sophiestree in reply to Suffererc

🤣

Longtimer profile image
Longtimer in reply to Suffererc

That is so unbelievable it's sadly funny!......your poor son won't forget that!.....

JanetRosslyn profile image
JanetRosslyn in reply to Suffererc

Ha ha ha... that made me laugh out loud... brilliant!

Suffererc profile image
Suffererc in reply to JanetRosslyn

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 😂🤣😂🤣😂

PMRpro profile image
PMRproAmbassador in reply to Suffererc

Two for the price of one?????

PMRpro profile image
PMRproAmbassador in reply to Suffererc

Sounds a parallel to physician heal thyself ...

Broseley profile image
Broseley

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.

cycli profile image
cycli in reply to Broseley

never follow orders if they don't make sense or aren't good for you. What are they going to do anyway?

Tiki15 profile image
Tiki15

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.

Sophiestree profile image
Sophiestree

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.

PMRpro profile image
PMRproAmbassador in reply to Sophiestree

Of course the inflammation markers were normal range - that's how TCZ works and they can't be used. It is all the other things ...

Someone who came from Luton should know better - why were they mentioned at all? Autopilot???????

Sophiestree profile image
Sophiestree in reply to PMRpro

or wrong person? why would I have pain in my bones? muscles 100%

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