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Scleroderma with negative bloodtests.


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#1 franky1234

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Posted 01 March 2016 - 08:58 PM

Hi everyone,

 

I got diagnosed with primary Raynaud's over 2 years ago and I've not had a break from my symptoms.  I have tried several medications to no avail; I've also just had an iloprost infusion but this has not worked.  Just recently I have developed symptoms of scleroderma, skin thickening, rash, capillary hemorrhage in every finger, inflammation of the stomach, some type of little blood blisters in my mouth, joint pain and a few more symptoms.

 

My blood tests are negative; I am really confused.



#2 Joelf

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Posted 02 March 2016 - 05:17 AM

Hi Franky,

 

Welcome to these forums!

 

I'm sorry to hear that you've been suffering with worrying symptoms, which possibly indicate that you may have scleroderma.

 

As it happens, it is perfectly possible to have negative blood tests and yet go on to develop full blown scleroderma and vice versa, as many of our members can testify (step forward, Amanda!) We actually have numerous threads on this very subject and if you go to the search engine at the top of this page and put in "antibodies", it will bring up many similar queries.

 

We do recommend that you consult a listed scleroderma expert, as this complex disease requires specialist knowledge and expertise.

 

Kind regards,


Jo Frowde
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#3 Speedo

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Posted 02 March 2016 - 06:01 AM

Hello:

 

I was diagnosed with rapidly progressing diffuse systemic sclerosis in December 2015.  My diagnosis was based on clinical symptoms, chronic Raynaud's, lung involvement (interstitial lung disease), thickened skin over most of my body, and esophageal involvement.  Ironically, I tested negative for Anti-SCL70, ANA, rheumatoid factor, and other tests indicative of scleroderma.  I too was confused although my doctors tell me this is not uncommon.  Regardless, there's no mistaking my condition based on my clinical symptoms.  I'm on month two of treatment with mycophenolate and prednisone.  I hope they work!  Best of luck to you as you deal with your condition.  Know you're not alone.

 

Speros



#4 Shelley Ensz

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Posted 03 March 2016 - 08:13 AM

Hi Speedo,

 

Welcome to Sclero Forums!  I'm sorry you have diffuse scleroderma, but glad that you found us and that you are letting others know that they are not alone.

 

:hug-group:


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.

#5 Margaret

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Posted 03 March 2016 - 01:34 PM

Hi Franky and Speros.....welcome to the forums.  You can learn a lot here!!

 

The flip side of the coin is having all the positive blood work for scleroderma but only internal involvement....no Raynard's, skin issues, etc.  That can lead to a diagnosis of UCTD....Undifferentiated Connective Tissue disease.  Either way, both are serious diseases that need to be treated and followed.

 

Take care, Everyone.

Margaret

Mom to Gareth, 27 years old, DS/ASD/UCTD



#6 Sweet

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Posted 05 March 2016 - 09:13 AM

Hi Franky!

 

Welcome to the forums. I'm so glad you found us. All of this can be very confusing indeed. As was already mentioned, blood tests are not always reliable. AND a good scleroderma expert, looks at the big picture to make a diagnosis, which at times can take a very long time. You were given a link to find an expert, and I highly encourage you to do so. 

 

Best to you and I look forward to hearing of your progress in this journey. 


Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#7 franky1234

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Posted 05 March 2016 - 08:20 PM

Hi everyone,

Thank you so much for your wonderful kind words. I've been in agonising pain the past few days and I'm not sure what's going on. I'm trying to find a scleroderma specialist in the UK.

Thank you so much for your wonderful support.

#8 Joelf

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Posted 06 March 2016 - 04:36 AM

Hi Franky,

 

You will need to be referred to a scleroderma expert by your general practitioner; as per my previous link, there are scleroderma specialists in Salford, which may be helpful to you.

 

I'm afraid you will need to be fairly proactive with the NHS, as scleroderma is such a little known disease.

 

Kind regards,


Jo Frowde
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#9 Amanda Thorpe

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Posted 10 March 2016 - 12:46 PM

Hello Franky

Well join the club and welcome! I have had scleroderma for 9 years, my ANA only just became positive in 2014 and my SCL-70 is still negative. Go me!

Take care and keep posting.
Amanda Thorpe
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