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Biomarker for Diffuse Scleroderma skin has been discovered!


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#1 kapetrie

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Posted 05 November 2012 - 07:21 PM

I got diagnosed with limited scleroderma/ CREST sydrome about 6years ago. Have been seen by Rheumatologist who sent me for a lung xray and ECG says that apart from minor decreased muscle movement of eosphagus that my other symptoms (aches in my joints, back pain, numbness running down my arms, fatigue and a whole lot more) are not related to my condition. I've been to general practitioner who is good and has sent me for many tests that come back as normal. Pain medication treatment is not flexible enough for me, as I still need to work. Where to from here?

#2 Shelley Ensz

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Posted 05 November 2012 - 07:53 PM

Hi Kapetrie,

Welcome to Sclero Forums! I'm sorry you have scleroderma and hope that we will be able to help you find some good answers to your medical care.

It sounds as though you may be in need of a new rheumatologist, one who is more aware of the broad range of scleroderma symptoms. As luck would have it, Scleroderma Australia should be able to let you know of any good scleroderma experts in their area.

:emoticons-group-hug:
Warm Hugs,

Shelley Ensz
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Hotline and Donations: 1-800-564-7099

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

#3 Amanda Thorpe

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Posted 06 November 2012 - 03:22 AM

Hello Kapetrie

Welcome to the forums!

Have a look at our video symptoms of systemic scleroderma and you'll notice that joint pain is listed as a potential symptom. As for fatigue, it's not included in the diagnostic criteria but is a well known symptom experienced by many of us with scleroderma. In fact I type this in my jammies about to go back to sleep...it's 10:27 a.m.! Incidentally chronic pain, again not part of the diagnostic criteria, is a scleroderma symptom and again many of us have it. Have a look at our pain management video as medication is just one option.

Obviously I can't say for sure that your joint pain and fatigue are caused by your scleroderma but it's worth discussing with your doctor, preferably one who is a scleroderma expert.

Let us know how you get on and keep posting.

Take care.
Amanda Thorpe
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#4 Robyn Sims

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Posted 06 November 2012 - 03:50 AM

Hello Kapetrie,

So pleased you logged onto this Forum site for some extra help and advice.

Amanda has given very good advice. Although all rheumatologists would or should know about scleroderma, unfortunately there are only a few in each State who are well versed in Scleroderma.

There are scleroderma clinics in Victoria, NSW, WA, Tasmania and SA. If you contact the State organisation near you they should be able to give you guidance as to who would be good for you as a second opinion.

I was fortunate enough to attend the 1st World Systemic Sclerosis Congress in Florence in 2010. A survey had been conducted by Scleroderma Canada and one of the questions asked to approximately 600 participants was "What would you consider the worst symptom of scleroderma for you?" And the answer was Fatigue. This was presented to a team of medico's and at this year's Congress there had been some research into this. At this stage the doctors feel that the combination of all the trauma the body undergoes with scleroderma, causes this fatigue. The research is ongoing. So yes, a terrible urge to rest, and then not feel refreshed, is certainly one of the most difficult problems with scleroderma.

Hope we can help you with a rheumatologist for a second opinion. Remember, you are the one paying the doctor, so you are entitled to seek further opinions.

Kind regards

#5 Joelf

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Posted 06 November 2012 - 07:21 AM

Hi Kapetrie,

Welcome to these forums!

I'm sorry to hear that your rheumatologist could not be more helpful with the debilitating symptoms from which you're suffering, but hopefully after Shelley's, Amanda's and Robyn's advice you will be able to find a Scleroderma expert who can give you more specialised treatment.

Please do keep posting and let us know how you're faring.

Kind regards,

Jo Frowde
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#6 kapetrie

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Posted 06 November 2012 - 06:47 PM

Thank you to all; I feel a little better and will follow up on the great advice.

kap

#7 Robyn Sims

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Posted 07 November 2012 - 12:46 AM

Great!

This is a wonderful source of information and I really appreciate the work of Shelley and all her good friends and volunteers.

Kind regards

#8 Amanda Thorpe

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Posted 07 November 2012 - 03:57 PM

I hope you're including yourself in that Robyn, but for you there would not be an Aussie forum so thank YOU for all of your hard work.

Take care.
Amanda Thorpe
ISN Sclero Forums Senior Support Specialist
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International Scleroderma Network (ISN)

#9 Shelley Ensz

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Posted 14 November 2012 - 10:13 AM

Yes, really, Robyn, you get the main credit for our Aussie forum. Without you, it wouldn't have existed! Thank you for making it happen, we all appreciate it. :emoticons-yes:
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

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

#10 Joelf

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Posted 03 January 2013 - 02:19 PM

Hi Kapetrie,

I do hope that you're getting on okay after the holidays and wondered whether you've had any success finding another rheumatologist with more specialised Scleroderma knowledge?

Kind regards,

Jo Frowde
ISN Assistant Webmaster

SD World Webmaster
ISN Sclero Forums Manager
ISN News Manager

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International Scleroderma Network (ISN)