Appointment looming.

[spiral]

i have really enjoyed reading everyone's blogs, they have all been informative, helpful or humorous. I now find myself needing your help and advice, i have my first appt with rheumatologist ( i have been waiting since may) have you any advice on what i should ask besides the basics, should i have someone with me ? very nervous about this appt, any help would be greatly appreciated.

[swapshop]

hi spiral - have you tried typing 'newbie' in the search box above - this will link to several first appointment stories. i would certainly take someone with you - a second pair of ears and support. good luck!

[spiral in reply to swapshop]

thank you swapshop i will try doing that. need all the help i can get, like everyone on here. i think a second pair of ears is a great idea, i doubt if i will remember everything that is said

[Hidden]

Whatever you ask, I'd advise you to write it down in short form such as bullet points. And talk about the questions and issues you are going to raise with the person who is going with you beforehand.

I imagine the main question in your mind will be whether the Rheumy agrees that you have RA but I expect that s/he will take care of that one. You might want to ask whether you have any damage to your joints although s/he is unlikely to know until you have had x-rays or a scan etc. Another question I'd ask is 'how will you monitor my disease'?

I'm sure you will think of some questions about any medication you are prescribed. But perhaps an important one is whether there is a helpline number you can ring if you later remember something you forgot to ask / if you have any problems. Such lines are usually staffed by Rheumy nurses. I was diagnosed back in June but haven't phoned the helpline till today (I'd forgotten I'd been given it!) and the nurse who phoned me back was incredibly helpful.

Don't be nervous! I hope it goes really well,

Christina xx

[Hidden]

I know this is sneaky but I recorded my appointments on my iphone for my own use only. These recordings have proved terribly useful because of the long waits between appointments and have meant that at subsequent appointments I've been able to pick up on points my rheumatologist made. Having someone else there is helpful I'm sure although mine are in a small hospital room and I felt it might impact on the doctor/ patient communication if I'd had my husband or a friend in there with me. At my last apt there was a junior doctor and the head physio in the room so that was enough! I found that by recording these consultations I could play them back to my husband later too.

Another suggestion is that you take photos of visibly swollen joints and print them off. I did this and it made a huge difference to the diagnostic process my consultant agreed and saves stress if there's nothing much to show them on the day. Good luck! Tilda x

[earthwitch]

I'd definitely encourage you to take someone with you - family member, spouse, or good friend who understands. The reason being that first appointments can be rather overwhelming with loads of information, and also because in my experience doctors seem to explain things better when there is someone else there. Talk to your friend first about what your problems actually are, so if you forget something significant they can mention it for you.

Apart from questions about treatment, and investigations, I'd definitely ask when you will be seen again. If they don't find a lot on the first visit you could just end up discharged back to GP until more problems develop, so making sure you do get a follow up appointment is key to keeping your condition monitored.

If you are given any new treatment, make sure you know whether you are meant to go back to GP if you have any problems with it, or if it needs to be monitored, or whether you can contact the rheumatologist direct. If you get a diagnosis, also ask if you have access to a rheumatology nurse.

[spiral]

thank you so much all of you for your help and advice. Each one of you have made very valid points, a lot of which i hadn't thought about. as i dont have any close relationships, i dont have anyone to bounce ideas off of. so your help is invaluable. i will let you all know how i got on xx