Just been diagnosed

Hi all

Had the dreaded phone call yesterday from my consultant I have been diagnosed with mixed connective tissue disease and lupus...

Haven't really took it in yet pretty shocked still and feel like I'm dreaming, knew I was going to be diagnosed with it but being told I do actually have it is another feeling.

I have to start treatment first thing Tuesday morning, steroid injections and hydroxychoroquine

5 Replies

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  • Hello Leanne

    Am so glad you're here 😊. Thanks for this update. Yes, even though you've seen this diagnosis coming, the reality is shocking. You've been through a lot health-wise for some time now...and been very brave about it all. And your doctors are paying close attention to your case. So you've got some good team work going πŸ‘πŸ‘πŸ‘ ....now your version of immune dysfunction & connective tissue disorder will become clearer to you & your doctors as you react to this initial treatment plan. i, for one, will be with you in spirit πŸ˜‰ this Tuesday: courage...try to think of this as the first step towards a life with less pain and discomfort. Be frank with your doctors & nurses: let them know about any concerns & fears. Open communication helps all involved to get the best from doctor-nurse-patient relationships πŸ‘πŸ‘πŸ‘

    Please let us know how things go

    πŸ€πŸ€πŸ€ coco

  • Hello. It's a strange mix of emotions isn't it. You're frightened and scared about the future holds but also relieved that you have a diagnosis and treatment can follow. I was also relieved that I might be taken more seriously, after being made to feel like a hypochondriac for a while by various GPs. I hope your treatment works well for you and you feel a benefit quickly. Stay strong and stay in touch here. This site and it's wonderful community have helped me more than anything else.

  • Hi,

    Despite the shock,had a few of those over the years so know where you're coming from, now you can learn of acceptance of diagnosis and work from there.

    Diagnosis is a bit like if you have a huge ugly mountain to climb its easier,less dangerous and at least you can get some lovely views on the way as opposed to trying to do it in the dark,pre diagnosis,when you are unsure which way and how fast to go in case you drop off.

    So,treatment to start and you will start to get some quality of life back so really pleased about that for you.

    Do please get a notebook to write down how you feel now and then keep a note of symptoms and feelings as you stsrt treatment and diagnosed journey.

    This will do 2 things.

    1 It will remind you of each little improvement you experience,always a positive thing to see it in writing,and let you know what does/doesn't help .

    2 It can be helpful for future appointments to have a clear diary/dateline effect for consultants to see any improvements,reactions,side effects of new symptoms.

    Ok that's my input for now but will be thinking of you and watching out for your future posts with hope of seeing you becoming a whole better less symptomatic happy bunny.

  • Hi there. I'm new here, but I just wanted to say I'm so sorry for your recent diagnosis. Although, I know it can be VERY frustrating to continue going to doctors without a definitive diagnosis & treatment plan.

    I have been diagnosed with fibromyalgia, CFS, autonomic dysfunction & chronic migraines. I've been having "new" symptoms lately...swelling in hands, feet & face. Joint pain, anemia, etc. My sed rate is slightly elevated, but my ANA & RF are normal. My doctor thinks I've either got a new autoimmune disorder or he really thinks I'm developing a connective tissue disorder. If you don't mind, would you be willing to share your symptoms with me?

    Thank you so much & im so glad there's a community here to be a part of!

  • I do get a lot of symptoms, swelling joints, rashes, electric shocks, burning, pins and needles, lack of blood supply. I also have Raynaud's and an underactive thyroid to go with it.

    Hope your diagnosed pretty soon, horrible having to wait

    X

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