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Biomarker for Diffuse Scleroderma skin has been discovered!


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Update on results


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#1 Jene29

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Posted 29 July 2009 - 03:29 AM

Hey everyone! I hope you are all doing well today. I posted a few times about a month ago about a possible Scleroderma diagnosis. I got my second opinion at John's Hopkins a week and a half ago (I was lucky, they called with a cancellation the next day!). Dr. Wigley looked over my information and they called to tell me that he does not think I have Sleroderma so I was referred to their regular rheumatologist department. They were great! Dr. Maynard asked me a bunch of questions and did a full exam. In the end she confirmed that it is not Scleroderma or any other autoimmune disease. I had blood work done too. I got those results back yesterday and everything looks good! There were 4 pages of results to tests they ran on my blood so I am fairly confident that nothing was missed. I am going to see a NEW GI doctor to find out about the dysmotility in my esophagus and more testing with my family doctor concerning the "trouble breathing" issue.

This experience has been somewhat of an eye opener and I am extremely grateful. You all are a great support system to each other! I wish you all nothing but the best!

Jen

#2 Shelley Ensz

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Posted 29 July 2009 - 03:48 AM

Hi Jen,

Thank you for the update on your trip to Johns Hopkins. I'm relieved for you that all your tests came out good and that scleroderma is basically ruled out. That has to be a huge load off your shoulders!

You don't need to disappear off Sclero Forums just because you managed to escape a scleroderma diagnosis. We have many members who have encountered a too-close-for-comfort possible scleroderma diagnosis. You know first hand what all the emotions are like, you have survived the experience, and you could be of great comfort and assistance to others who are in the initial stages of sorting things out and hopefully ruling out scleroderma.

Plus, it would be dandy for us to know what is causing your esophageal dysmotility or breathing issues, when that is finally figured out.
Warm Hugs,

Shelley Ensz
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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.

#3 Sweet

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Posted 29 July 2009 - 06:58 AM

Hi Jen,
Thanks for checking back with us and what great news!
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#4 Amanda Thorpe

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Posted 29 July 2009 - 07:44 AM

Hello Jen

Now just because you've escaped a sclero diagnosis don't be thinking you can escape from us! :lol: Shelley's right, you have great experience to share if you wish and we'd like to know exactly what's causing your symptoms.

Take care.
Amanda Thorpe
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