New Rheumatology appointment

[Elephantmad]

Hi everyone, thank you so much for your responses yesterday, it really made me feel like fighting. It's a long story but after arguing the rejection I've managed to get an appointment on Friday morning!

Now though I'm feeling really nervous and worried about seeing a specialist. My rf factor is negative and I've heard horror stories about Drs not believing the pain.

I've got symmetrical pain in feet, ankles, knees, elbows, wrists and hands. Minor swelling on and off, and difficulty performing some dailly tasks, like buttons, driving, holding cutlery etc. Morning stiffness lasts around and hr. I've had 3 " flares" where all joints throb at once and swell. My Gp also thinks I have Raynauds although it's never been diagnosed and yesterday I was diagnosed with chronic dry eye by an eye specialist who told me I am not producing any tears at all!

I would really appreciate some advice to help me feel confident going In to the appointment, I really don't want to be fobbed off due to bloods.

TIA

xx

[Hidden]

Your getting there I think the hard part was getting a referral. Have you got anyone who can go with you? They can tell them how it effects you both mentally and physically. Don’t play it down tell them about your worst days and good . Make notes and bring them with you

Good luck 🤞🏻

[Elephantmad in reply to Hidden]

Thank you, yes my husband will come with me and I have everything documented. Just need to keep positive now x

[Mmrr]

Do you have any written records of your health, a diary, journal or suchlike ? I have kept a daily diary for over 2 years now, when I first realised I being labelled as depressed. It has helped transformed my care.

I find the written records very useful. I summarise the diary into one sheet and take along to my appointments. I also take the full journal for reference. It's bright orange any very noticeable, my partner accompanies me on every visit, I never go alone, and records what is being said into the journal, we make it very obvious. He regularly asks for clarity, as do I ....are you saying ? .....how do you know that? .....is there are alternative diagnosis? ......have you considered sero negative RA ? ......what are our options ? .....what investigations could provide evidence of what you are saying ?......when will I be having that investigation? And if necessary (only needed once) ......why are you dismissing what we say ? ....

I have all my GP and hospital notes through a freedom of information request and have told the consultant I have them and how useful they have been in helping me prepare for the appointment.

Throughout the appointment I give direct eye contact with the rheumatologist, I never look away, my partner does the same.

On entering the room, you could say something like, I'm pleased you could see me quickly as I have been very unwell and need help, my health continues to deteriorate. It can give good vibes to start the appointment (But don't be over appreciative , be strong but polite)

I ask for the summary sheet to be scanned into my notes, but lay a paper copy in the consultants table as I talk through them. Only one nurse (and one rheumatologist, now gone) made a fuss re: having it scanned to my notes, I didn't argue, I simply lifted it and said, no worries my consultants secretary will do it. It was emailed as soon as I got home, with an explanation, that the nurse didn't do it. My money is on the nurse wont refuse again.

I take my shoes off in the waiting room and wear easily removed clothes for examination, it makes it difficult for them not to do it then. If they don't examine you ask directly...are you not going to examine my joints ? Why not? And note it in your book, making sure you are seen doing so.

If you do not have a journal to summarise, don't despair...you can still provide a summary sheet.

I give 3/4 bullet points of that are big issues for me , now....You have examples above you could use . Be brief, but ready to expand if asked.

Mention anything that is going well... just for balance....but don't manufacture anything.

Have a few question on the sheet too... examples might include...

What is my diagnosis ? ( my previous consultant said, I don't have a crystal ball, my partner was back straight away...we are not expecting mystic meg, just a rheumatologist)

What are my options ?

Can you explain sero negative RA ...( even although you know, get them to spell it out)

Remember the consultant is an ordinary person doing a job for a salary, paid for by people like you and me from our taxes. They are not special in any way. They are public servants, there to serve you on the day. You most probably would not accept sub standard work from rom a plumber or a bank manager...Drs are just the same. Be confident, I usually find they respond well if you are pleasant but well prepared and direct. Take no nonsense, none.

And do let us know how you get on ?

[Elephantmad in reply to Mmrr]

Thank you, this is so detailed and helpful. I have everything in a journal and will prepare questions. Here's hoping she is nice. X