new to all this...bit scary!!!

ok...so i saw the consultant for the first time today...he didnt say exactly that its scleroderma but he did mention that...well systemic sclerosis along with raynauds ....wants to send me for a heart scan and lung test...had bloods taken which turned both arms completely navy blue when the tourniquet was put on...the dr and consultant were both impressed at the colour...think i scared the poor nurse though..have hoorendous heartburn being controlled with omepazole and my hands really are achy. any advice or tips/websites to help me understand more greatly apprieciated

many thanks

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  • Hello Kerry

    Systemic Sclerosis /scleroderma are the same thing. Heart and lung test are normal and loads of blood tests ..... Heartburn also part the the disease.

    Best thing for you is to contact the Raynauds and Scleroderma Association who have loads of information on the above ...

    Welcome aboard x

  • ah bless you Kerry !! Anteater gives wise advice !!

    raynauds.org.uk is definitely a great place to start, and it sounds as though you may have a diagnosis before the disease takes a hold. Which is an advantage, as when caught and treated in the early stages, scleroderma causes less damage which could potentially be life threatening.

    And although there is currently no cure, there is a lot more understanding about the disease and its suppression than there used to be, only a decade ago.

    Check out my 'about' section on here !!

    and to endorse Anteaters sentiments, Welcome aboard !! and know that you are not alone ! even if those close around you do not fully understand what you are going through, there are people here who are more than happy to share the scleroderma and raynauds challenge - myself included :) x

  • BTW - who did you go and see ? If you saw Prof Denton, from personal experience, you are in the BEST medical care :)

  • Kerry you sound a mirror image of me, i am still waiting diagnosis and have nail foil capilliary next week.Where abouts are yuo ? i am in lincolnshire

  • The tests help to find our more about you and it is important. The more tests the better. Don't worry about them. Go on talking to us and Welcome.

    Best wishes.

  • I'm pretty new to this too. I've had diffuse systemic sclerosis and raynaulds for about 18 months. Seemingly endless tests, but get them all. Knowledge is power and all that. Feeling much better than I did a few months ago. Having people to talk to on here helps no end. Welcome to this exclusive club :-)

  • thanks for your support and advice...my hands really ache today after being prodded and poked yesterday....im moving from northumberland to cambridgeshire in the next few months so that will be a pain...but im going to write everything down as i wont remember half the stuff!!!

  • lollipop the closest hospital to me will probably be peterborough

  • Kerry

    You could always ask your GP to refer you to the Royal Free Hospital in Hampstead - it will be quite a way for you to travel but it is an EXCELLENT unit and the knowledge is fantastic. Like Living-the dream says you will be in the best medical care x

  • thanx for that anteater...i'll wait for now and see how things go but will remember this because i know now you can be referred to whereever...i dont know what the rheu dept is like in peterborough but no doubt i'll find out x

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