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no diagnosis

hi there. just come across this site and catchng up with everything

about me - im 44, in August last year i had a sudden massive swelling in my left knee after bending to reach the bottom shelf at the supermarket. my knees have felt painful when kneeling, climbing stairs that kind of thing for a few years. after a few weeks the right knee also flaired up. i was refered to rheumatology and given steroid injs in both knees, which brought the sweeling and pain right down, for about 2 weeks than bang back again, this time with pain and swelling in both feet and ankle. Blood tests didnt show RA but pointed to gout (altho i dont fit any of the other criteria eg male over weight heavy drinker)and anemia. i was started on allurpurinol and cochicine, iron and b12 suppliaments. things havent improved. im going from injs to taking prednisolne every month almost. My rheumatoligist talked of starting me on methotrexate when this latest course of prednisolne has ended and i have had a mri scan on my knee. They have also discovered a heart murmur just had an echocardiogram last week and waiting for the results. i feel so frustarted and confused as i dont have a solid disagnosis i dont know what to expect. i have much reduced mobility in my knees now and still have pain daily despite taking naproxen and co-codomol, altho it is much less painful than before. my mood is very low and i am very tired. my next rheumy app is on the 14th april hopefully i might have some answers then

3 Replies

It is very demoralising waiting for a firm diagnosis. Generally though, you get one eventually. A certain amount of 'wait and see' does seem to be a valid part of rheumatology & maybe that's especially true if you might have a heart murmur to take into account.

On the other hand, if you do indeed turn out to have inflammatory arthritis, starting disease modifying treatment ASAP also seems to be very important, according to most sources.

Is your appointment on 14th April? I'd suggest you document not just the pain etc. but also get a firm angle on loss of function - the things you can't do anymore or which are more difficult than they used to be. Sometimes rheumys take these life-changing factors more seriously than others I think.

As well as being really clear about your symptoms I'd suggest you politely but firmly convey your desire to get a diagnosis as soon as possible and also go equipped with some knowledge about the possible drugs. Perhaps you could express your readiness to get started with drugs that will make a difference, if that is how you feel.

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I agree with the above. You don't say if you've had an X-ray. You do mention methotrexate which in my experience helped withRA and oa. It's good to keep up the pressure through the GP. I hope you get somewhere soon


Hi there chelleD, I am very sorry to hear of your trouble's but I think sometimes its best to be patient and wait I understand its hard but you wouldn't want to be treated for something you may not have and given medication you don't need. I have heard and have read that RA is sometimes very difficult to diagnose and in some people can take a very long time, it all seems to go on how the RA presents its self in an individual and the bloods do not all ways show this, given the choice I would opt for the gout lol least it can be treated quickly. Sorry I am not making light of your situation and I can feel your desperation but hang in there your news may be good and to hear you have not got RA would be a positive thing. I wish you luck and hope you get the answers your looking for, just keep positive ... I know its hard. xxxx


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