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Mixed Connective Tissue Disease (MCTD)

  • 19-07-2014 1:46pm
    #1
    honerbright
    Registered Users, Registered Users 2 Posts: 1,228 ✭✭✭


    Howdy all!

    After looking at my last bloods my GP has come to the conclusion* that I have something called Mixed Connective Tissue Disease (Also known as Sharps Syndrome), which from what little I know about it is a mixture of lupus, scleroderma and polymyositis.

    *Conclusion came from blood results showing Positive Speckled Anti-nuclear and also Positive Anti-U1 RNP antibodies.

    I've been on a waiting list for Rheumatolgy at CUH since October last year (although symptoms started in July 2013). Currently on daily anti-imflamatories with co-codamol for pain relief. Meds seem to help somewhat but there are often days where I will wake up screaming :o because of pains in my shoulders or I've made a fist in my sleep (I have great difficulty doing so :( )

    I've just turned 26 and I'm working full time in a fairly manual job (I'm an assistant manager in a busy store). Thankfully I've never had to take time off for this so far (actually only became assistant manager in the middle of all this in april!), but honestly there are days where I just can't face the thought of leaving the house because I'm so tired/sore.

    I was also born with something called Pierre Robin Syndrome, which I know sometimes has other illness that often present with this but I don't think this is one of them.

    My GP, as great as he is didn't feel he knew enough about the disease to tell me too much other than it was a very vague disease and was going to try and speed up my appointment with Rheumatology but I'm still yet to hear anything.

    Basically here wondering if anyone else has this and how they are finding managing the disease?


Comments

  • #2
    LorMal
    Closed Accounts Posts: 3,372 ✭✭✭LorMal


    Hi there

    really sorry to here that. I have Ankylosing Spondylitis which is in the same family of auto immune diseases - they all seem to stem from the body's immune system attacking the person. Unfortunately, my 16 year old son has been diagnosed with connective tissue disease - but they are not sure which one yet as he is so young.

    You sound in a lot of pain. Generally GPs are pretty rubbish at all these diseases - they go undiagnosed or wrongly diagnosed for years - I had AS for 20 years before diagnosis.

    You need to push hard for an appointment - or go privately initially and in the meantime go on the waiting list for public.(thats what I did)

    I am now on anti-tnf factor medication called Embrel - miracle stuff - it lowers the immune system and stops the inflammation. I am almost perfectly well now - one injection per week - no pain whatsoever.

    Kick up a storm - don't be passive -get the proper diagnosis and get the right meds for you.

    Best of luck


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