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Biomarker for Diffuse Scleroderma skin has been discovered!


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Hi everybody! So nice to see others like me.


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7 replies to this topic

#1 jennuwhine

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Posted 24 June 2015 - 07:51 AM

Hi. I was diagnosed with Systemic Lupus a few years ago after many years of searching for the right diagnosis. I was also diagnosed with Raynaud's and Hughes. Two weeks ago I was also diagnosed with  scleroderma and need to be tested for Sjogrens and Fibromyalgia. There really aren't very many people with this. I was wondering why none of my lupus friends could relate to some of my symptoms. Now I know why.

 

I haven't gotten the official word on which kind I have, but I strongly suspect systemic as I have pulmonary issues and my muscles in my upper arms are hard as rocks and don't work anymore. Has anyone found any natural treatments that help? I am allergic to most medications thanks to the lupus. Thanks and it's so nice to meet you all.



#2 miocean

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Posted 24 June 2015 - 09:59 AM

Dear jennuwhine,

 

Welcome to sclero forums! Sorry about your multiple diagnoses but know you have found the right place for answers, support, and even a place to whine. I hope they don't add too many more to the list.

 

miocean


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#3 Sweet

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Posted 24 June 2015 - 05:10 PM

Dear jennuwhine,

 

Welcome to sclero forums! So glad you've joined us but sorry it's due to all the diagnoses you are dealing with. You've come to the right place for accurate information, talking to those who truly get it and friendship. 

 

Are you seeing a scleroderma expert?


Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#4 Sweet

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Posted 24 June 2015 - 05:20 PM

Dear jennuwhine, I'm not sure where you are located but here is a link to the Scleroderma Experts in the U.S. Hope there is one near you. It's very helpful to see someone that specializes in the disease. 


Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#5 Joelf

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Posted 24 June 2015 - 07:27 PM

Hi Jennuwhine,

Welcome to these forums!

I'm sorry to hear that you've been diagnosed with Scleroderma and are also suffering with Lupus and other associated conditions.

Sweet has given you good advice regarding consulting a Scleroderma expert and I've included a link to our medical page on Scleroderma in Overlap. We have a lot of accurate and up to date information in our Medical pages which I hope you'll find helpful and informative.

Please do keep posting and let us know the results of your tests for Sjogren's and Fibromyalgia.

Kind regards,

Jo Frowde
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#6 jennuwhine

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Posted 25 June 2015 - 05:07 AM

Thank you so much. I will check it out. No, I just found out about the scleroderma, so I have not yet even seen a rheumatologist for that issue. Waiting for my referral to go through. I imagine it's best to see an expert because of how rare this is. I'm very surprised that a family doctor in a small town even knew to check for it. All my family members will be seeing him from now on.
Thank you for the welcome.



#7 Shelley Ensz

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Posted 08 July 2015 - 06:27 AM

Hi Jennuwhine,

Do you have any word on your referral yet?
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.

#8 jennuwhine

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Posted 10 July 2015 - 04:11 PM

Not yet. I've been calling, but I keep getting the machine. I'll try again tomorrow, and if nothing, I will be going to the office. Thanks for asking.