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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Kerry72
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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
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!!!
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
Hi, was in same position last year and it all felt very scary. Heart and lung tests were taken as a ‘baseline’ so they can see if other symptoms develop in future. I have positive ANA and anticentromere antibodies in blood test which are strong indicators for scleroderma. I found the SRUK website informative but a bit scary as they tell you what could happen but it is worth remembering this can affect people in different ways....my GP has said it may not develop further than it currently (for me this is Raynaud’s). The SRUK site sells gloves which are great for keeping your hands warm. I also find keeping them moisturised and exercising them daily helps. I am also investigating diet at the moment as there appears to be evidence of link between our guts and our autoimmune systems and for me I’d rather try something than just wait. Found it helps to focus on what you have today and making the most of it helps too. Best of luck.
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New to this
Clinic, scary doctors, abroad.
Confused a bit 
Brand new to Raynaud's
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