Confused and fed up

swansong
swansong Member Posts: 4
Have seen several docs re my symptoms but they can't agree whether it's RA/osteo/virus producing arth symptoms.

Probs began 3 yrs ago with a virus which both I and partner had. We both developed swollen joints - mine worse than his - feet ankles, hands, elbows.

Had blood test - not RA. Had further attacks since then - approx 2 per year. Each time I'm left with what i think is another heberden's node. However, have had hand Xray and back xray and apparently don't have osteo.

We have a complicated doctors surgery where it's almost impossible to see same one twice - may be i shd insist on this.....

Example of shenanigans - the last doc I saw about this a few months ago sent me for blood test for RA/virus. Symptoms had passed but went anyway. Blood tests were clear but doc said to let them know next flare-up and get blood test done asap by contacting surgery. Next flare-up, contacted surgery - spoke to different doc who said don't bother with blood test as last one clear - it's prob osteo. Then he saw clean hand x-ray in my file and said it wasn't osteo but gave me advice for osteo anyway - oily fish, swimmming etc

Am fed up with not really knowing what it is/doctors contradicting each other. My sister has lupus - my test has come back neagtive for this but worrried docs might be missing something.

Can anyone suggest what it might be happening (apart from me being fobbed off by docs!!!?)
Thanks

Comments

  • helpline_team
    helpline_team Posts: 2,769
    edited 30. Nov -1, 00:00
    Dear Swansong,

    It sounds as if you have had a really difficult time in trying to get some answers, it must be frustrating, and the inconsistency in what you are being told is not helping.

    This is quite a long time to be having symptoms such as this without a diagnosis. The most appropriate thing to do now would be to get a referral from your GP to a consultant rheumatologist, whereby the appropriate tests can be given. This might be the first step in piecing together what may be happening.

    Best wishes
    Jaslin
  • swansong
    swansong Member Posts: 4
    edited 30. Nov -1, 00:00
    Thanks, Jaslin. I think I'll do what you suggest. Had hoped someone else recognised these symptoms and had a ready answer for me!

    It's hard to know whether it's something serious or not - I suppose the important thing for everyone is to stay on the case until they get an answer -
    no -one's going to do it for you, esp with the NHS as erratic as it is.
  • helpline_team
    helpline_team Posts: 2,769
    edited 30. Nov -1, 00:00
    Dear Swansong,

    Even if you are having a frustrating time getting a diagnosis, you can often improve things by developing your self-management skills - learning more about communicating with doctors, exercise and pain management, and prioritising your day. (For example it's often worth seeing a physiotherapist, even if the diagnosis is unclear - they will know when it's unsafe to work, but will need an up to date x-ray probably.)

    If you follow this link (in your area) http://www.arthritiscare.org.uk/InyourArea
    you can see the self-management courses coming up.
    You can e-mail the local regional office to be put on a waiting list to help get a course put on locally in any case.

    Do e-mail [email protected] if you'd like an information pack.

    Hope that's helpful

    Guy
  • swansong
    swansong Member Posts: 4
    edited 30. Nov -1, 00:00
    Thanks, Guy. With each new diagnosis I have been doing what the doc recommended until another doc changed diagnosis and therefore the things that might help.

    I'm going back to docs to get them to refer me to a specialist.

    Thanks for link - will have a look.

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