Awaiting diagnosis

[Mariafrancis54]

Hi all I'm a first timer and officially not an RA sufferer according to the clinic - my bloods indicate there might be an RA problem in future but it isn't yet positive. Thing is my knees hands feet and recently shoulders seem to be involved - knees originally swollen and sore - hands always sore and swollen - had injections but they only work for a short time and I've been told I can only have three a year - I am scared and waiting for when and if I get treatment - is it normal to not be diagnosed and yet kept on the RA casebook?

[hawker955]

Ithink it might be. I was told that I had post-viral reactive arthritis for almost a year before someone changed their mind and decided it was RA. Bizarrely, one doctor said it must be RA because I'd been put on biological treatment! You don't make a diagnosis on the basis of treatment given! You make a diagnosis on symptoms and blood-test results! The rheumatologist initially told me that I had suffered a viral infection three months previous to my swollen joints. I told him that I had not, I know this, because as a sportsman I keep training records and do not train if ill. M diaries tell me that I was not ill at the time he suggested! He insisted that I had, but he was wrong. In any event, the persistence of my symptoms despite non-steroidals and sulphasalazine led to the review of the diagnosis. But I've only ever had moderately high CRP. Therefore Diagnosis is not always black and white.

[Mariafrancis54 in reply to hawker955]

Thank you - I don't understand all you have said but at least I have something to look up and perhaps learn more about too

[hawker955 in reply to Mariafrancis54]

AsTell me which terms you don't understand... I'll try to clarify.

[helixhelix]

It is a disease that can develop slowly over time, but if you are already having painful symptoms then I think they are being a bit cavalier just to put you off. Especially if the steroids jabs have helped even if only briefly, as this does indicate there is a level of inflammation in your body.

Do you know what your blood test results are? Sometimes you do need to stand your ground and push hard to be taken seriously. If you are negative for the rheumatoid factor (RF) and anti-CCP test then you could still have what's called sero-negative rheumatoid arthritis, or one of the other inflammatory arthritis's. If you also don't have raised inflammation markers (ESR or CRP tests) then it's easy to dismiss you. BUT a number of people here do have very low levels naturally, it's just not that common. So you have to keep saying "then why am I in pain?". If you have swollen joints I'm amazed that they have not taken notice.

Can you ask (or even demand) that your painful joints to be examined with ultrasound? This is a cheap and easy way of really seeing what's going on in your joints. If you do get this done, don't take anti-inflammatoires for the week before hand.

[Mariafrancis54 in reply to helixhelix]

Thank you for your advice - I had my hands scanned about 6 months ago and was told although the joints were very swollen there was little trace of RA - I have sore wrists hands knees instep and recently elbows and shoulders too - I will ask lots of questions in March when I have my next appointment - thanks again

[helixhelix in reply to Mariafrancis54]

I wonder what "little trace of RA" means....? I think lots of questions are needed, as do they mean no erosions (which is good as erosions=damage) or no inflammation? And if no inflammation then what is causing your joints to swell? Can you take someone with you next appointment to support you in sitting tight until you get better answers?

[Mariafrancis54 in reply to helixhelix]

Yes perhaps you are right - I would like to feel they are listening at least - the scan on my hands showed inflammation but evidently the doctor was looking for spots that appear red and couldn't find them.

[DelicateInput in reply to Mariafrancis54]

Get a copy of both the scans and of the reports on them.

[Frankiefarr]

I tested RF negative and my anti ccp was only 12 so not much higher than normal. Also my inflammatory markers are also always normal however as soon as the rheumatologist aw me she said you have RA. I have pain and swelling in my hands, feet, knees, elbows, you name it. They started treating me straight away. They said you cannot rely on blood tests alone. I would push again. It seems odd to me they are happy to give you steroid injections but nothing else unless they think it's viral RA

[Mariafrancis54]

Hi - thank you for your previous advice - I saw RA doc last week and a scan showed up RA - now on drugs hydroxychloroquine 200mg -methotrexate 10mg rising in the third week to 15 - folic acid 5mg. Not much of an ecplaination on how best to take them and loads of possible side effects - I'm really freaking out - any advice is appreciated please