At Last I have an appointment with Rheumy, But what do I need to take i.e History of Symptoms/Side effects,

[zarzis]

Hi all

At last after 10 months suspected GCA, I have an appointment with a Dr Byrne next friday a Rheumy at Colchester Hospital.

What I need to know is what I need to prepare so as I can give him a clear picture of symptoms/side effects etc/BP chart ??

Your advise as always will be most welcome

Very many thanks

Peter

[Annodomini]

If your GP has referred you to the rheumy, he/she has probably given a case history. I know my GP sent a full list of medication and an outline of my PMR history. But only you can tell the rheumy how your condition has affected you.

[zarzis in reply to Annodomini]

Many thanks Annodomini, yes I am sure he will have sent case history, and as you say only I can explain how I feel, so some notes would be a good idea, Thanks again

Best wishes.... Peter

[piglette in reply to zarzis]

I always ask for copies of the letters written to consultants and also from them. Also I ask for all my test results. The initial letter from my GP to the rheumatologist was full of mistakes, I think he must have made it up. Incorrect medication, incorrect dosage, incorrect history. He did get my name right. The letter back from the rheumatologist was also full of mistakes. I think she took notes and then wrote the letter a week later and was not very good at taking notes. She even created a new drug I was not taking. I hate to think what my medical notes are like. I know one GP filled in my drinking amount when she had never even talked to me about it. I apparently drink five units a week!

[PMRpro Ambassador in reply to piglette]

How restrained... Low alcohol champagne

It does worry me when I see the fiction so many doctors letters are. Because there is no guarantee that their notes are any less inaccurate - and THAT is downright dangerous.

I often suggest people record an appointment - not that I can, no smartphone. But my lot seem a bit more with it.

[piglette in reply to PMRpro]

Red wine tonight!

As you say some of the rubbish they write down could be really dangerous in some cases.

[paddyfield in reply to piglette]

Eight years ago a whiplash injury claim complicated by a dx of PD in th middle of the claim lead to my studying closely multiple private consultant reports and this has made me aware of the catalogue of mistakes to be found in every report. No NHS consultants letter since has been correct either due as you say to their note-taking and/ or transcribing skills not being up to the task. .Add to that typo's uncorrected because letters are routinely signed unseen and you have a very muddled picture.

Just to mention one consequence I had to have a hissy fit to get both hips MRI'd after being greeted by the MRI person with " you are having trouble with your left hip" when I had repeatedly corrected the GP when he only referred to my left hip.. Luckily they had some leeway and did both sides which in fact showed up worse bursitis and tendon inflammation on the right.

That's why they seem to ask you the same thing every time you go because presumably they are aware of the problem

Patient and consultant could be asked at the outset if they minded the interview being recorded explaining the greater accuracy to be gained.. Better still surely we already have the technology to transcribe the spoken word into a typed record?

[PMRpro Ambassador in reply to paddyfield]

Not necessarily - I know a US doctor who uses Dragon Dictate. He writes a blog and frequently posts hilarious mis-hears! Some of which require looking closely and knowing the context to identify the error because they COULD be what is written.

Of course, a lot of UK transcription now is done in India - asking for trouble IMHO given the problems I have had in the past being understood by call centre staff who really only understand written English or English spoken with a sub-continental accent. I don't speak broad Glaswegian or Yorkshire!

My husband had a similar problem with getting the sides wrong when he was having a hernia repaired - but as a member of staff at the hospital no-one minded him pointing it out. However, he was once seeing a patient together with the ward doctor who said: Now sir, you know you are having your right leg amputated tomorrow? Patient: No I'm not! The ward doctor then switched on the persuasion tone - to no avail, the patient was insistent he was NOT having his right leg amputated. Then he said: Look, and threw back the sheet. He certainly wasn't having his left leg amputated - he hadn't got one!

I've always said I would have arrows drawn in indelible felt tip pointing to the right place before being sent for surgery.

Laughing aside, there was a case a few years ago where someone was having one kidney removed - they took out the healthy one because they looked at the notes and didn't check. Patient therefore needed dialysis and a repeat operation - not good.

[paddyfield in reply to paddyfield]

P.S. I did not really mean record - rather as an aid for the consultant in checking their notes

[Hidden]

Hi Peter

If you have a concise list of symptoms, dates, Meds & how you were etc

It refreshes your mind of dates etc, try not to have A4 or a Folder it can be A4 but folded!

Also list your specific questions too so you don't come out, having forgotten the most important one to you.

When I worked in Outpatients, Consultants like concise info but when they see the A4 they always take a sharp intake of breath!

I always give my Consultant the printed list of Meds that's attached to my Prescription, then it's accurate, my Rheumatologist always likes to test my urine, easier to take a sample than produce one to order, pick up a bottle from your Doctors Surgery if you can.

Good Luck 🍀

Mrs N

[zarzis]

Hi again Mrs Nails

OK Thanks I get the picture, sample bottle will be requested, and duly filled next Friday, will work on questions, thanks again always helpful

Warmest wishes

Peter

[PMRpro Ambassador]

Am I reading that right: 10 months suspected GCA and only now a rheumy appointment? What has your GP been playing at?

[zarzis]

Hi PMRpro Well this is the case, he has been medling and now I think he has run out of idea's, so have my appointment next Friday at long last, I think a little knowledge is a dangerous thing especially when not all GP's are experienced in PMR/GCA and use some of us for extra training

Thanks anyway

Warmest regards. . . . . Peter

[PMRpro Ambassador in reply to zarzis]

Don't think I'd even use the "a" - GPs in general have little knowledge of GCA and it belongs in the hands of a specialist. At least once. And as a medical emergency - just like a stroke or heart attack.

It's been an interesting day for posts of that sort!

[zarzis]

Hi PMRpro, at this time I feel you are more experienced in these matters than our GP's as are others in our group, it's really reassuring to know we have all of you for advise, without you all I could have easily given up months age. Thank you all

Warmest wishes

Peter

[PMRpro Ambassador in reply to zarzis]

Hehe - I've certainly had PMR for a lot longer than any doctor

I've been very lucky, I have been associated with the first English PMRGCA charity in the NE of England for the last 8 years and have heard the stories of hundreds of patients with PMR and GCA. Since PMR was finally diagnosed I've also had very sensible doctors who almost all treat me as an equal in discussing problems and allow me to experiment with dose a bit. I'm also a patient research partner - and that gives me access to more rheumies than most others, and not just in the UK.

It certainly keeps me out of mischief in retirement!

[zarzis]

Keep it up as we are lucky to benefit from your experience, thanks so much

Warmest wishes

Peter

[Seabyrd]

I am totally shocked to hear "suspected CGA" good grief... your Dr must be nuts... GCA can cause irreversible blindness and should be treated accordingly... Have you been taking prednisone? if so how much ? It takes massive doses up to 60mg a day to treat GCA once they determine that you have it or even suspect strongly that you do. Often the biopsy doesn't show that you have it especially if you are on prednisone, but you can still have it. I hope you don't have it and suspect you may not given the long time involved but I would sure want to know... I hope you will be in competent hands very soon... best wishes to you. I have PMR/GCA/RA and have some experience with these diseases but I am NOT a doctor or an expert... we are all different and react differently to pain and meds.... important that you are aware of that.