confused

Hi have let off steam been to the doctors to try to get them to acknowledge RA diagnosed 40 years ago and am being told that rheumatoid was never mentioned that it was never put into my notes but I was diagnosed "episodic arthritis" over the years doctors have used the word RA to describe my symptoms I am angry at the lies that I have been told and the doctor cannot understand why I am not pleased I was with a Rheumatologist about 30 years ago and put on anti inflammatory tablets over the years I have had RA blood test and been told that the reading was up a little please can any one out there enlighten me to the new diagnoses of episodic arthritis mind you at last I am getting treatment from GP of sorts Blue pill at night feldene gel and paracetamols so let see if they work I feel really let down by the medical p[profession and the lies I have been told but relieved I haven't got RA mind you she getting my thumbs xrayed and blood test done Ill let you know result Thank you for letting me let off steam

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  • Would it be possible to see another GP at your practice as it appears you have little faith in your current one & that won't help your frustration? I have no knowledge of "episodic arthritis", how does it affect you? Does it mean you have joint pain at intervals, by that I mean not consistently? Were you not given the results of your blood test to give you an indication of what "a little up means"? If your GP has arranged for x-rays of your thumbs I assume you have pain or swelling there, do you have any more anywhere else? When you see your GP for the results of your blood test politely but assertively ask him to explain the results to you, this should help you get a better understanding of why he requested them. You don't say what the blue pill is that you take at night but I do know that Feldene Gel is used to ease the pain of osteoarthritis.

    Sorry there are so many questions.

  • Insist on being referred to a rheumatologist for a repeat review, things have changed a lot over the past few years

  • Episodic means intermittent so I suppose we all it then . Fight back and demand referral . I still think we should organise vigilante groups to batter these doctors with our sticks into submission .. wobblies anon

  • AND give them something that makes them feel as we do so they live a day (or longer) in our shoes!!

  • Hi huggybear,

    so sorry to hear that you feel so bad. Not quite sure from your post about what has happened with your diagnosis and treatment over the years. There is a form of rheumatoid arthritis called "Palindromic arthritis" which comes and goes and perhaps is what the previous doctor meant by "episodic" Below is a link to a site about it:

    hopkinsarthritis.org/physic...

    Currently in the UK rheumatoid arthritis (RA) can only be diagnosed by a rheumatology consultant and not by a GP. Blood tests on their own are not enough to give a diagnosis as even a negative result for rheumatoid factor (which is one of the tests) does not mean that RA is not present. The treatment of RA has changed considerably in the last 30 years. If you feel that you may have RA you can asked to be referred to a rheumatology consultant for further investigation. If you would like to find out more please do not hesitate to contact the NRAS helpline on:

    0800 298 7650 Monday - Friday 9.30am - 4.30pm

    Hope you get sorted soon and all the best with everything

    Regards

    Beverley ( NRAS Helpline)

  • Hi - I have found my doctor, and my rheumatologist, reluctant to give me a specific, definitive diagnoses. This is because there are so many types of arthritis (100 or more apparently), and there is no one definitive test for rheumatoid arthritis (you'll see many people here who have been diagnosed with multiple conditions, or have had their diagnoses changed over the years). Episodic arthritis, if they didn't mean palindromic arthritis as suggested above, sounds to me like a description of symptoms rather than a specific diagnoses. If your doctors over the years have been speaking of RA then you could assume that they are at least sure that your 'episodic arthritis' is an inflammatory arthritis (rather than osteo). I would definitely take the many suggestions made here re writing your specific questions down - it is so easy to see a specialist, get overwhelmed, and leave more confused than when you arrived. Take notes, and get them to summarise the main points. If they can't give you a clear diagnoses, ask what steps will need to be taken to get one. I know my diagnoses still has a bit of a question mark over it - for a long time I would tell people when they asked why I was suddenly so ill (over a year and a half I became severely incapacitated and lost 20% of my bodyweight) "my immune system is aggressively attacking my joints - we don't know why", or "a severe inflammatory arthritis". Whatever I have (we are presuming enteropathic arthritis - related to a diagnoses of ulcerative colitis) - I'm just glad they finally gave me some medication that worked - though one of my hands is now damaged, I've felt mostly normal now since Christmas - can walk, have energy again, and am back to my normal weight! Good luck :)

  • Thank you so much Iam at present having blood tests and an X-ray so let's hope .My attitude is to say ah well get on with life and go with the good times and put up with the bad having read all the people on here I realise Iam not as bad as some so thank you for your rely and I hope that you get relief with your illness thank you

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