My appointment is on 20th September and I have no idea what questions I need to ask.
I had terrible pains in my left toes and ankle and the ankle was very swollen. At present the most pain and discomfort I have is in my right hand (I am right handed) and I struggle to open containers and lift anything remotely heavy - spagetti bolognaise in a saucepan went all over the cooker the other evening!
My right knee feels 'uncomfortable' and swells if I overdo things. I am not on any medication at present - I don't like taking tablets at the best of times - and the pain and discomfort isn't too bad
Any help would be gratefully appreciated
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Erika
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11 Replies
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Hi Erika, you just need to be honest with him and tell him exactly how you feel. I say this so many times on here that half the diagnosis comes from your blood results the other half from the patient. The consultant only know what you tell him, for instance your bloods may look ok but you may be suffering terribly the consultant could presume bloods ok your ok. That however isn't always the case, very rarely the case infact.
Ask about the medication he will put you on, make sure you have an emergency helpline number to call (if they have one) you may need to know something and can't wait until your next appointment.
How your blood results are looking and what he thinks of them. have you had RA confirmed? if not ask if he can confirm it by doing the anti-ccp test for you.
Write things down you want to ask, generally when you go for your appointment you forget what to ask.
Don't forget to tell him any other health problems or allergies you have/had, although you will be asked these.
Also take someone with you if you can, they will help you through and may think of other questions to ask,they will also help you remember what you have been told.
Hi erica, I asked a question quite similar to yours about a trip to my consultant. It should be under the tag of consultant?.. Best advice I had is ask whatever you wanted. Tell them about your pain and tell them about the spaghetti incident, don't worry we have all had them. Dont play it down, when they say how are you feeling tell them about how you are on your worst day aswel as a good day.
Also if possible take somebody with you because I know now my mum comes with me she takes in different bits of information than I do, if that isn't possible take a note pad.
Hope it goes well remember it is your time too show them how RA effects your life when your not in there office.
Good luck and when you've been jump on here and discuss the bits your worried, pleased or scared about it makes such a difference. Remember your not alone.
Good luck with your visit. Firstly, I would make a list and add to it as you think of things. At the end of your consultation take out the list and take a moment to make sure you have covered everything you needed to ask
I suppose you need to know if you are positive for RA factor, as that will predict how you will be treated, ( I think). Try not get to worried, but don't be afraid to be totally honest,even if you are a bit teary. I think its a good idea to bring a good friend or parent, just as an extra pair of ears (so tell them to just listen & keep it zipped). A good Rheumatolgist will fully physically examine you on 1st visit ( hint no thongs Haha!)
They will be able to see most likely from the time you leave the chair in the waiting room - how you are? and they do watch how you walk & sit.
something.
You could ask about steroid injections, they are extremely helpful for localised swelling ie. your knee & pain relief in the interim.
The main concern of the Consultant will be to try and get the inflammation markers down in your bloods to a normal level. Also to get your pain under control. Make no mistake they are really only interested in getting the disease under control. (That is of course in my opinion).
Lastly, if you don't like the Consultant get a second opinion!. Trust in your doctor is extremely important.
I hope this has helped you a little, it is a hard and confusing time for you, but I guess and hope you will feel much reassured after your 1st visit.
I just remembered a last little trick I use sometimes with doctors when I'm not sure about something I say 'if it was you?' or 'if it was your sister/ mother?' 'what would you advise them'?. This works with choices of medication/ operations/ drinking an odd glass of wine with 'no alcohol' meds etc. It makes the doctor or Consultant put themselves in your shoes, and they probably know what are the most effective medications/ ops of course they do!.
Their mothers, sisters etc would not be restricted by costs.
Total Best Wishes, Gina.
good luck too xx
Hi Erika - my advice would be to prioritise explaining clearly as possible the way you feel but not to try and ask too many questions - just be as honest as possible and listen hard to the replies. Having not yet been formally diagnosed, despite positive blood tests (RF and anti -ccp) and having similar symptoms to the ones you describe, I suggest that you don't go into this first consultation with too many expectations. Each consultant is different and I found that the chap I saw was brisk, suave and quite thorough - but not keen to engage in conversation about RA. In fact he seemed surprised that I knew anything about RA and taken aback that I had questions to ask of him.
I was pretty disappointed by him on the day but relieved now because I feel it's bought me some time to experiment on helping myself using diets and researching pain relief and other therapies before he starts treating me with more aggressive medication. You may be more clear cut than me of course, everyone's different, but if there is any doubt that it is RA then it is better that they don't rush to conclusions. My symptoms are in remission just now apart from an ache in the hands and clumsiness you describe - and I'm glad that I don't have to put this down to any medication. But at the time I was experiencing more pain in many joints and just wanted him to be conclusive and get on with it all. Hope this helps - good luck. Tilda
Hi erika,
After a bad start with my rheumy first two appointments he didn't give me time to speak I felt I needed to offload and explain how I felt and not just how he was telling me I felt from blood results, mris etc.
So I came up with the idea of printing a skeleton map out front and back views and then marking each area and symptoms how I felt about it etc.
The page was full, but it worked and he listened better, now I have one on the side so inbetween appointments I fill out anything that's bothering me so I don't forget to ask next visit.
Also a lot of people told me to keep a diary of how I was feeling day to day too
Good luck with your appointment, keep us posted how you get on x
I was very lucky with my Rheumy consultant particularly as I was in a wheelchair when first saw him and couldn't move. He was so concerned, he ordered me straight into hospital and gave me an immediate steroid injection as I couldn't use my hands at all. I had two days of steroids being dripped in over 4 hours at the hospital, and also had fluid taken off my knees. Went home 2 days later still in a wheelchair as I couldn't walk far but absolutely brilliant treatment. Himself was with me and asked the consultant all sorts of things and he patiently explained everything, what was happening to me, my bloods (which the GP had taken earlier) and what they meant and the ongoing progress of the disease and how he intended to treat it.
Hope you get on ok. Make a list of questions to ask and don't be afraid to add to the list when you get there as things occur to you. Ask him about treatment and what to expect with the disease progress. Don't be fobbed off with vague and unsatisfactory answers. It is your body which is affected and likely to be for years to come and you need to know what to expect. Take someone with you who can also ask questions as well and will probably take more note of the answers than you will.
When we saw my consultant the first time, I was so ill and in such pain, I couldn't have cared less if he had cut my head off at that point! Life just wasn't worth living. He did tell me some months later that I was the worst he had ever seen!
A small tip - I use both hands to lift things off the stove top or out of the oven. If Himself is around, he will do it for me. But I did drop a lot of things in the first few months.
I do a lot of sliding pots from hob to sink etc, mostly try not to cook. I like your style LL, just re read, your original diagnosis story, under my question when did you first realise something was wrong. I too did'nt care if they cut my head off at the first appointment I was so discombobulated.... Ahhhh the bad ole days! Altho, I am having a mini flare at the moment!!!! hope Humira has'nt stopped its job.
xxx G
It would be worth a call to the NRAS Helpline as they are able to help prioritise. They are excellent at their job and would be only too happy to help. Hope it all goes well x
Thank you everyone for all the advice - I now have a much better idea of what to ask and what to tell him about the way I am feeling. Hubby is coming with me so hopefully he will remember anything I forget!! Will let you know how I get one - thank you for all the good wishes xxx
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