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Feeling upset and confused

I am 32 and have not yet been diagnosed although at my first rheumatology appointment the rheumatologist said he thinks I have rheumatoid arthritis. I have had x-rays on my hands and feet and last week I had an ultrasound.

When I saw him at the beginning of October I was suffering from a swollen middle finger and a sore little finger on my right hand (this had been going on for over a year). It seems to be getting worse now though - all my fingers on my right hand get sore and swollen and now my thumbs are beginning to ache. I noticed a few days ago that the knuckle on my hand that connects to my swollen middle finger is now inflamed and quite swollen. I don't have an appointment until the end of January so I was a bit worried.
I contacted the rheumatologist's secretary and she said she would speak to him and get him to look at my results and if he needs to see me sooner he will.
She phoned me yesterday and told me that she has spoken to the doctor and he has looked at all my results. The x-ray and ultra-sound were clear (although the rheumatologist that did the scan said there was damage to my middle finger and my little finger) and all my blood tests were negative.

My initial blood tests showed elevated CRP and ESR and apparently I'm anaemic and I have large red blood cells - but now they are all negative.

I asked if he thinks it's RA and she said no. He will see me in January unless anything else changes. I should be jumping up and down with glee but I'm not - I feel like crying! I'm feeling more confused than ever.



  • dibdabdibdab Posts: 1,498
    edited 30. Nov -1, 00:00
    Oh dear- have some hugs ((((((((((((((( )))))))))))).

    It's so frustrating to think there's a diagnosis on the horizon and then it isn't what you thought. But try to find a positive side- I was 1st diagnosed with something called Palindromic Arthritis which was inflammatory but kind of came and went- so my results were variable- in fact I had 3 lots of blood tests via GP before they referred me to rheumatology. Once my original diagnosis came through they began prescribing DMARD's to control disease activity, and it was several years before it became full blown RA- for some it never does. And on the positive side I was already taking the meds they also prescribe for RA.

    Maybe try not to do too much googling-there are far too many scare stories out there- but sites like this have accurate information to support and inform. You might like to talk to the help line folks for support?

    Hope the future feels brighter really soon.

    Deb xx
  • helpline_teamhelpline_team Posts: 2,019
    edited 30. Nov -1, 00:00
    Hi Claire,
    Thanks for your last posting. It's totally natural to feel upset and more more confused than ever. It sounds like you'd psyched yourself up to be told you've got RA. Having gone through the torment of preparing yourself for a RA diagnosis you then get told something completely different. At least if you'd been diagnosed with RA the pain you've been experiencing would have a name, which makes it more tangible. You'd also been informed about treatment options and that can help give you hope of light at the end of the tunnel.
    As it is, what you've been left with is a lot of uncertainty, whilst still experiencing the pain - so it's not surprising you're feeling miserable.
    I'm not sure if there's much I can say that will be of comfort right now.
    For some people the road to diagnosis can be long and frustrating. The tests you've undergone are to try and build up a picture of an inflammatory process in the immune system. ESR and CRP can be raised for reasons other than RA, which is why they wouldn't rely on one set of blood tests. If the pain and swelling in your fingers continues to give you grief you could ask your GP about a steroid injection into the joints. This should at least provide some temporay relief which might help tide you over until your next rheumatology appointment.
    Please feel free to contact us as often or as little as you like, either here on the forum or through the 0808 800 4050 freephone helpline.

    Best wishes
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