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Hi, I am new and new to this disease as well.


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#61 amberjolie

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Posted 01 June 2012 - 06:47 AM

When I asked my rheumatologist if she thought I had diffuse or limited, she said she thought limited because of my mouth involvement. Even though my skin involvement includes my upper arms, my chest, and a little bit on my stomach. But your doctor obviously didn't think that mouth involvement excluded the possibility of diffuse. Interesting how different doctors look at things.

I suppose things are going rather slowly though for me, so that could be part of the limited diagnosis. It all started with finger ulcers 2 1/2 years ago. Then I started getting some joint pain. The skin started getting blotchy about 2 years ago, on my wrists, and then it spread from there. I guess diffuse skin thickening occurs much more quickly.

Just yesterday I got an echocardiogram and an ECG (I originally thought they were the same thing, with ECG being an acronym for echocardiogram, but apparently they're different tests), and will do the pulmonary tests in a month. The rheumatologist wants to do these once a year to stay on top of any potential issues with my heart or lungs.

#62 jad12

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Posted 01 June 2012 - 08:45 PM

I'm not a doctor but I'm happy to share my thoughts. I didn't take their word for it, I looked up all the symptoms and indicators. I unfortunately definitely have diffuse. Rapidity is part of it. Having SCL-70 instead of anti-centromere is a big tell. They are almost always mutually exclusive, a very few people might have both antibodies I read somewhere, but I have just SCL-70. I just had myself tested for anti-RNA polymerase III to see how much at risk of renal failure I am. I haven't got that result back yet. I understand some people don't test positive for SCL-70 or anti-centromeres and still have scleroderma, but with me it's pretty cut and dried. Now especially that it's marching up my arms and I just got diagnosed not that long ago. It was just six months ago I noticed the Raynaud's and shortly after the thickening skin on the back of my hands.

By the way, I grew up in Ontario. :)

#63 amberjolie

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Posted 03 June 2012 - 02:09 PM

Oh, yes, I didn't realize you had the Scl-70 antibodies. I continue to test negative for all antibodies (other than the ANA). Even though a lip biopsy shows I have Sjogren's, and a skin biopsy shows I have scleroderma.

And yes, since your skin changes seem to have occurred in a few months, that is faster than a couple of years like myself.

I understand that there are still many severities of the diffuse kind, so hopefully yours decides to move slowly when it comes to the kidneys and other organs.

I would imagine New Zealand is quite beautiful and the weather's probably a lot nicer than in Ontario (unless you're one of those people that actually liked the winter - I don't! :P )

#64 jad12

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Posted 03 June 2012 - 04:05 PM

I don't like winter either, it was part of the draw to NZ. I am also hoping for a mild course, thank you for the kind thought! I wish for you the best of results as well!