Blonde moment: Hi Everyone, thank you so much for your... - NRAS

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Blonde moment

winnie27 profile image
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Hi Everyone, thank you so much for your replies. I don't think i was making much sense yesterday when i posted!! this will be my 4th visit to Rheumatology. In December i saw a consultant at clinic rather than a GP with special interest in Rheumatology and he gave me a steroid injection in my bottom to help reduce inflammation. He said i am a difficult case because there is no obvious mass swelling in one joint as i have pain in my fands, wrists, upper arms and knees. He requested repeat bloods in January and i was to see him in February, but i have been feeling so poorly i went back to GP. This is why i am being seen Monday. The results of my recent bloods are back but i don't know what they are. When rheumatology ciinic phoned with new appointment they said it was with a sister and that it would be to start treatment. I just don't know if that means they are or already have made a diagnosis and feel confused and a bit scared to be honest.

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winnie27
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without knowing the ins & outs in detail the first thing that strikes me is that this site is full of people who have RA without significant swelling so I wouldn't worry too much about being a difficult case. I suspect that, if pressed, the consultant might well admit that most of his patiesnts are difficult cases in one way or another! The early days of searching for a diagnosis and starting treatment are invariably confusing and scary. But when the drugs start to work it's funny how fear flies out the window! Sometimes the diagnosis is 'inflammatory arthritis' if the consultant is not sure whether it is RA or one of it's little buddies. And getting as informed as possible about our disease works for lots of us, but few people start off being crystal clear about it all, so you are bound to have to sort of feel your way through at first.

Don't be scared. I'm a complete lightweight with drugs - one nurofen used to zombify me all day - but here I am taking 25mg of methotrexate every week & I vaguely recall it once made me feel a bit nauseous, that's it! But do have a good think about the questions you want to ask on Monday & go prepared. Is someone going to go with you? That can be a good option, either as another pair of ears to help remember all that's said or even just to keep you company while you are waiting to be seen.

I've got an appointment on Monday too, must take my own advice & get those questions writ! All the best and don't worry, Luce x

Hello Winnie

I can imagine it is very worrying at this time for you, they may not have made a diagnosis yet and want to see you to talk everything through with you. I would agree with Woolly that we are probably all difficult cases - I have pain all over as well with only real visible swelling in my hands.

They do start treatment as early as possible to try and counteract any long term damage so it is good that they are moving quickly.

As Woolly says Writing all the questions down before hand is really beneficial. I know when i go in i forget everything and can hardly remember what the consultant says at all. If you have someone going with you it would be great - i have always went alone and it is impossible to take in everything, particularly during the first appointments.

Good luck on Monday, could you ring the nras helpline and talk to them, they might be able to allay your fears a bit or explain a bit more what will happen.

winnie27 profile image
winnie27

Thanks for the advice, i guess i will find out more on Monday. x

It sounds as if they may have diagnosed you without actually explaining this Winnie - if you are seeing a nurse? Its different in each area so can't advise - in my area it all goes to the GP and that can take an age. I was diagnosed over a year ago and that was at second rheumy apt but have only been seen once since and have no rheumy nurse - will see a different visiting rheumy a week today. Once you are told what's going on and start treatment things will hopefully seem more manageable. I have hardly had any visible swelling and as said yesterday your inflammatory markers are raised so something inflammatory must be going on. RA isn't the end of the world I promise. Tilda x

oldtimer profile image
oldtimer

in my experience seeing the nurse is good news. I have found that the rheumy nurses go out of their way to explain carefully what your results show, what decisions have been made and why. They have also explained the medications carefully and given written information to take away.

Take a notebook, recorder, and friend if you can. It's a lot to take in on one visit!

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