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Just finding out (newly diagnosed)

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#1 skipperr



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Posted 15 August 2012 - 08:38 AM

After endless months of doctors, tests, hospitals and ER visits, fiinally...it is confirmed I have systemic scleroderma. Is it comforting to finally have an answer? I think so even staring at the 15 medications they have me on. Any words of wisdom out there?

#2 Amanda Thorpe

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Posted 15 August 2012 - 12:10 PM

Hello Skipperr

Welcome to the forums and you'll get plenty of wise words here from the right people...people with scleroderma like myself, I have both systemic and localised.

Have a look at our video section especially diagnosis of scleroderma, difficult diagnosis and systemic scleroderma.

Multiple medications is common in scleroderma, in fact it's common in any chronic illness and their benefit far outweighs there nuisance factor. I think, in total, I take about 30 tablets a day. Good thing I still have my swallow reflex eh?!

What you want to do now is take it easy, have a breeze around the site and ask questions as they come up. The final piece of information I give is the details of scleroderma experts, if you aren't being treated by one you should be. Scleroderma is not a run of the mill chronic illness, one of the reasons it takes so long to achieve diagnosis, and you need a rheumatologist who knows the disease, what it can do and how to treat it.

Take care and keep posting.
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#3 Joelf


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Posted 15 August 2012 - 01:00 PM

Hi Skipperr,

Welcome to these friendly and informative forums!

Certainly multiple medications will now become a fact of life for you; my liver has never really forgiven me for bombarding it with the strong medicines I now have to take!! For myself, I felt very relieved when I actually found out the reason that I had been feeling so poorly, so that then I could start dealing with it.

As Amanda has said, do have a good look around our forums and medical pages and if you need more answers to your questions there are lots of members on this site to help and advise you.

Kind regards,
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#4 judyt


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Posted 15 August 2012 - 04:32 PM

Hi from me too,

Here on the other side of the world, the weather is different, night time is day time and we have NO scleroderma specialists here.

The thing that is the same, as much as it can be, is our disease.

You will find people of different creeds and cultures and opinions but they will all have kind hearts and understand instantly what you are on about, and all are willing to offer help and advice.

You will have your ups and downs just like the rest of us, but remember we are always here and somebody will always have had the same experience.

Take Care,
Stay cheerful,
Warm hugs.


#5 amberjolie


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Posted 15 August 2012 - 04:45 PM


No words of wisom here due to brain fog :P .

I'm relatively "early" in the disease process. Techniclly diagnosed in January (although I had suspected it for much longer, but having negative specific antibodies didn't help). I'm not on too many medications yet, but a lot of them don't seem to do much for me.

But, yes, it was nice to have a formal diagnosis, so at least I could explain to someone why I couldn't do something or was feeling exhausted, or whatever.

#6 miocean


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Posted 16 August 2012 - 08:00 AM

Hi skipperr,

Since scleroderma affects everyone differently and various parts of the body, be prepared to continue your journey with doctors and medications. Surround yourself with the best medical team possible and be as informed as you can without overly obsessing (guilty!) about it.

There is a lot of misinformation out there in cyberspace. When I was diagnosed 8 years ago and experienced sudden kidney failure I didn't think I'd be around today writing this. Through this forum I learned of many who have lived with and managed the disease for much longer than this. As Amanda says, "There is life after scleroderma. It may not be the life you expected..." I cannot tell you how that simple phrase got me through some very tough times.

This is a wonderful forum and the medical pages have almost endless information on anything and everything you may have a question on. You will find support, inspiration, and can express your frustration here without fear of being misunderstood. Everyone can learn from your experiences as well.

Keep posting.
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#7 Sweet


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Posted 17 August 2012 - 10:20 AM

Hi Skipper and welcome!

Yes I do believe that having an answer gives some peace of mind. Knowledge is power, so now you are able to take control of what is in your power. Amanda gave you excellent links, I hope you find them to be helpful.

Again welcome!
Warm and gentle hugs,

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International Scleroderma Network (ISN)

#8 Shelley Ensz

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Posted 17 August 2012 - 01:25 PM

Hi Skipper,

Welcome to Sclero Forums! I'm sorry you have scleroderma but I am glad that you got diagnosed. For most of us, it was "years and years" instead of "months and months" so you are ahead of the curve, just by being diagnosed so early on. I'm sending you some warm, welcoming hugs.

Warm Hugs,

Shelley Ensz
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The most important thing in the world to know about scleroderma is sclero.org.