Hello. I'm new :)

Hello. I'm new :)

Hi. I stumbled across the site when looking for answers.

I feel a bit lost at the moment.

Currently I've been having issues for about 2 years.

It started with my little fingers bending and has ended up with a swan neck deformity shape. When my left index finger began to bend down and was painful I went to the GP who referred me to the hospital.

In the 18 months or so I have had hand therapy. Seen various muscularskeletal consultants (worked my way up the levels to the top one.)

All very baffled.

Currently under RA. But had a letter and results shown don't have that so am being referred back to general out patients.

Very frustrated, I feel like they don't know what's wrong.

Have had MRI. several ultra sounds. So many blood test's.

I.e for lupus. Diabetes. RA

Currently my left index finger is bent. The tip joint.

The right hand has the swan neck little finger and the index fingers is the most painful. I daily have pain in the 2 joints of the finger and the pad. Sharp pains. Using voltrol which gives some help.

Have more splints. Support bandages and gloves than you could throw a sock at!

Reason I have been tested twice for lupus is I get a UV rash on skin.

Feeling quite Down. Wish I could get a diagnosis to help with pain.

9 Replies

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  • Hi,

    I'm afraid I don't have any answers for you,but I just wanted to say 'hello'. I stumbled on this site too a couple of weeks ago and the support has been amazing. I hope you feel better soon.

    Lizzie x

  • Thank you Lizzie :)

  • I'm not sure that there are results that show for definite that a person DOESN'T have RA.

    What have they said about your fingers? Have you had x-rays?

    Hope you soon find some answers.

  • Hello. Yes Xrays. ..the works. Show nothings wrong mechanically.

    GP thinks RA, but the consultant doesn't think so.

    Is it very hard to get a diagnosis?

  • It can be very hard for some people if they don't test positive for antibodies.

    But that is really positive about your x rays. Hopefully, that means they can and will return to normal.

    Just hope you find out what is wrong.

  • I don't have RA as such. Officially I have lupus/uctd but I suspect I have elements of Palindromic Rheumatism too. My point is that I have no antibodies, to anything, but I definitely have an auto-immune rheumatological disease and have had this for nearly 30 years. Don't give up, persist with the doctors. Good luck x

  • Thank you Clare x

  • Unfortunatly some people dont show signs for many years but you will find this site very useful and helpful I have since joining a few months ago

  • Persistence is key. See you doctor for pain or difficulty sleeping or fatigue or whatever you are suffering every week if necessary. That's what it took for me to finally get to rheumatologist and diagnosis followed quickly. Although to be honest I didn't think I had RA. I thought my MS was acting up!! Oh well. Knowing is important and until I started going once to twice a week I feel like we stood I. Place.

    Good luck with persistence. I know it can be exhausting work.

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