Good News and Bad News

The good news is I don't have RA. The bad news is I have Mixed Connective Tissue Disease with Scleroderma. The Bad news is I will have to cancel my subscription to the wonderful NRAS. The good news is the Scleroderma Society membership is only £5 a year. I’m trying hard to look on the bright side and so far that is the only one I can find. Trust me when I say I think I would rather have RA.

I shall miss NRAS blogs and the question forum both of which I think are amazingly helpful and comforting. I doubt for a fiver the SC will have anything half as grand. I presume there might be a MCTD society as well so I might have to join that too.

I’m devastated and I don’t really know where to turn now. Thank you all for your help and advice over the last couple of years. Good luck and best wishes to you all. Ax

6 Replies

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  • Hi AMDP

    Well it's great that you've finally got a definitive diagnosis now, that must bring some relief.

    I wish you all the best for the future and am so glad that you found support here from our other RA bloggers.

    Best wishes

    Charlotte

  • I'm really sorry to hear that your news is more frying pan to fire than celebration.

    While I wouldn't normally comment on posts, I thought that you might want to know that the Raynaud's and Scleroderma Association also has a HealthUnlocked community: raynauds.healthunlocked.com/ (you won't need to re-register just join via the link and the group will be added to your profile).

    While it's not yet as active as this brilliant and supportive NRAS.HealthUnlocked site, you may find other patients there to help you. I do hope so - and I'm so glad to hear that our NRAS colleagues were such a good help for you in managing your time to diagnosis. I'm sure you'll find RSA is equally supportive. Fingers crossed that some of the learning will cross to this new autoimmune condition.

    I wish you luck in navigating your new journey with scleroderma.

    KatieB

  • Many thanks, KatieB. I have logged on to that one too now. All the best, Ax

  • Glad you have diagnosis and not RA. Good luch in future.

    Gina.

  • dont leave.. stay on both sites??.. best of luck neither conditon great.. think my consultant is thinking of down grading me from RA and fibromylagia.. to inflammatory artthritis and fibromyolgia.. she hasnt ever seen me without steroids.. also think my dreaded gold injections are working.. stuck with awful fatigue though xx

  • Oh Summer, what a bugger all this is, poor you. I have had ME for 20 odd years so know what fibromyalgia feels like, I am not sure "down grading" is quite the right term. All these conditions are so horribly debilitating one way or another and obviously very difficult to diagnose. Hey ho, chins up. Ax

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