What will a rheumy want to know?

Ames

Hi all. Firstly, I'm not asking for medical advice or info.

I have an appointment with a rheumatologist later in the week (finally!). I just wondered if anyone can give me an idea of what sort of questions they'll ask? I always find that when I'm on the spot in a medical appointment my mind goes blank, then on the way home I think 'oh, I should have mentioned x,y and z'.

So if I can get an idea of what they'll want to know, I can think of my answers and hopefully it'll be a better use of their time.

I'm guessing there'll be questions about how and when my joints swell, where and when I get pain? What time of day it's worse?

marcus6

Hi Ames,

I also have rheumatoid arthritis,

he will check you over and ask you how you have been, and then he will do das28 score test to see what joints are hurting,

When you get 5 mins join http://www.nras.org.uk/

on there you will find everything you need to know about RA, as anyone that does not have RA dont understand how we feel, on that site we all have RA and its a good place to talk.

Hope this helps

marcus6

Ames wrote: »

Hi all. Firstly, I'm not asking for medical advice or info.

I have an appointment with a rheumatologist later in the week (finally!). I just wondered if anyone can give me an idea of what sort of questions they'll ask? I always find that when I'm on the spot in a medical appointment my mind goes blank, then on the way home I think 'oh, I should have mentioned x,y and z'.

So if I can get an idea of what they'll want to know, I can think of my answers and hopefully it'll be a better use of their time.

I'm guessing there'll be questions about how and when my joints swell, where and when I get pain? What time of day it's worse?

Cyclamen

I saw a rheumatologist a few years ago...although not for R. Arthritis.

I had blood tests before i went and she sent me for some more 'just in case'.

She asked questions about pain levels and movement.

She manipulated joints (she asked first and was cautious so she didn't hurt me), some of this happened seated and some laying on a couch.

There were lots of questions about pain and movement at different times of the day etc.

I didn't prepare.. i just went with it and she diagnosed me and offered some leaflets.

You could try taking a list of your main symptoms. Maybe a basic outline of human body and just shade the areas where the different types of pain occur and frequencies.

There are no right or wrong answers and its ok to take time to answer the questions, please try not to worry.

I hope they can help you

Ames

Thanks! I'm not really worried about the appointment or diagnosis - whatever's wrong with me I've had for the best part of two decades. I'm actually more worried about getting my hopes up that they might find out what's wrong and be able to treat it and then getting disappointed!

I've been having a lot of anxiety attacks lately though, especially on a morning when my meds haven't kicked in, and the appointment's at 8.30. So I really need to have some notes with me or some idea of what to say.

I don't think they're looking at RA - my inflammation markers are too low for that (but much higher than they should be) based on my googling. It's my immunologist who's referred me as I have lots of problems with that. I apparantly have 'lots of symptoms of lots of things, but not all the symptoms of one'.

As for giving them info... at my last immunology appointment I presented them with a list I'd made. I'd put down every tiny thing I could think of that could possibly be a symptom of something. I don't know if anyone's actually bothered to read it all....

I kept a diary last summer of pain, energy, mood, joint swelling, and activity levels so I'll try and remember to take that along. I couldn't really spot any patterns though.

Thanks again for your help.

clark24

I'm seeing a Rheumatologist soon as I am HLA-B27 which has lead me to having AS and RA, I would advise you to ask them to do a blood test for the HLA-B27 antigen as it would help them in dealing with your condition. Until they found out I had the antigen they faffed about with 'oh you are too young' and 'it must be a sprained blah blah' etc but now they are all 'ooh er you have this thing therefore you have developed x,y and z.

I know you weren't asking for medical advice but testing for that sort of thing can really assist them in working out why things are happening and what will happen in the future.

Cyclamen

Ames wrote: »

Thanks! I'm not really worried about the appointment or diagnosis - whatever's wrong with me I've had for the best part of two decades. I'm actually more worried about getting my hopes up that they might find out what's wrong and be able to treat it and then getting disappointed!
.

I understand this completely..

It's a relief to have a label and no what you are dealing with but sad also.

I always get muddled.. upset if they cant 'fix me' or 'label me' but then upset if they 'can' as it means i am poorly.

Good luck

Ames

Just thought I'd update, I had the appointment today.

It was really positive. They didn't ask me much, as most of what they needed to know was in my notes from the last decade or so of pathology. At one point the registrar brought in his boss and my immunologist. It was like being in an episode of House, except I didn't have a clue what most of the words and numbers meant.

Anyway, they've decided on a barrage of tests including a brain scan - so at least I'll be able to prove I have two braincells to rub together (if I do, that is!).

They've also made a referral to a physiotherapist, which is something I've wanted for ages. It's been a catch 22 - I'm overweight and need to do something about it, but I didn't want to just rock up at a gym and make my joint problems worse.

So, for once, I seem to have come away from the hospital quite optimistic!

Cyclamen

great news ..

I am glad they are trying to help