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Biomarker for Diffuse Scleroderma skin has been discovered!


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Limited Scleroderma - Brisbane


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#1 mydotcom63

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Posted 16 September 2012 - 10:27 PM

Afternoon all

I was told that I had Limited Scleroderma a little over 2 years ago - I didn't have any symptoms but it was picked up in some routine blood tests organised by my gynaecologist when checking for issues with me taking a higher dose pill.

Had never heard of this before and he gave me the name of a specialist to see at Greenslopes Private who was an immunologist, but does that also mean he is a "Scleroderma Specialist" that I have seen referred to in other posts?

I went to see him, he kind of examined me - but not really sure what for. Can't say he was particularly forthcoming with information about what I could expect going forward. He checked my fingernails and a few other things that I don't recall. He arranged for me to have a Lung Function test and an ECG. I didn't hear from him for about 6 months or so when I finally got a letter saying basically nothing out of order I didn't chase him up as I really didn't know what was supposed to be wrong with me - if anything and I didn't feel "sick". All I know was that Limited was a much better diagnosis than Diffuse.

I haven't done anything about this since, but I am planning on doing some extended travel next year and don't want to go overseas and find that something unexpected crops up and I have no idea what it is or what to do about it or who to see. I really don't know what to even look for in regards to any progression or changes to the symptoms I may be experiencing - as far as I can say today, I don't have anything that shows as a symptom of anything other than sore knees from a particlarly hard PT session yesterday!!

Do I just go back to see him or is there someone / other type of specialist, that I should go to see? Should I see someone more regularly? I have no idea and would appreciate any information available of sources of such in Brisbane?

#2 Robyn Sims

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Posted 16 September 2012 - 11:25 PM

Hi let's call you Mydotcom!

You are one lucky lady. You are very wise to find out more about your condition before you go travelling. Even though you have no problems at the moment, educating yourself is a very good move.

If you were to contact www.sclerodermaaustralia.com.au they will send you a booklet and pamphlets which contains information about Limited and Diffuse scleroderma. The most common practice here in Australia is to see a rheumatologist for scleroderma. There are some very good rheumatolgoists in Brisbane who I am sure would keep a closer watch on you.

Kind regards,
Robyn Sims

#3 Joelf

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Posted 17 September 2012 - 12:14 AM

Hi Mydotcom63,

Welcome to these forums!

Although your blood tests may have shown positive autoantibodies for Scleroderma, it doesn't neccessarily mean that you will go on to develop the full blown disease. I'm very pleased to hear that you're not experiencing any symptoms of Scleroderma at present; it certainly is a good idea to educate yourself about the disease and I've included a link to our medical page on Limited Scleroderma to give you some more information.

Although you have had some tests for lung and cardio involvement, you should be having regular checkups and we do recommend that if possible, our members consult a Scleroderma specialist, as many rheumatologists do not have the knowledge and expertise to deal with this complex disease.

Enjoy your travelling next year and try not to worry too much about any progression of the disease (easier said than done, I know!! ;))

Kind regards,

Jo Frowde
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#4 Amanda Thorpe

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Posted 01 October 2012 - 12:37 PM

Hello Mydotcom

Welcome to the forums! Jo's quite right, just because you have a positive blood test does not mean you will go on to have scleroderma, have a look at our video about diagnosis of scleroderma which explains that an accurate diagnosis can only be made using a combination of blood work, clinical symptoms and history. Many people with blood work positive for scleroderma never go on to develop any symptoms and some people with scleroderma, like myself, never develop positive blood work. In summation, blood work is only an indicator of anything, it should not be used alone to rule scleroderma in or out.

I suggest that you just live your life until such time as you have symptoms, if that time ever arrives that is.

Take care.
Amanda Thorpe
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#5 Shelley Ensz

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Posted 16 October 2012 - 07:30 PM

Hi Mydotcom,

Let me extend my belated welcome to you for joining Sclero Forums. Your situation seems to be more and more common in the past few years, of people testing positive for scleroderma but having no symptoms. As the others have pointed out, you will be "okay" as long as you don't have any symptoms, and that might possibly be for the whole remainder of your life. However, I agree with the others that since you will be traveling extensively, it would be a great idea to have a good physical before you go, just to be on the safe side. And let us know how that all turns out, okay?

:emoticons-group-hug:
Warm Hugs,

Shelley Ensz
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#6 Joelf

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Posted 14 January 2013 - 06:27 AM

Hi Mydotcom,

I was wondering how you were progressing and whether you'd been able to locate a specialist in Brisbane?

I do hope that you're feeling well and that no further symptoms have presented themselves!

Kind regards,

Jo Frowde
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