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Biomarker for Diffuse Scleroderma skin has been discovered!


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Blood Work - Anti-Nuclear Antibodies and Rheumatoid Factor


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#1 Ron

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Posted 15 June 2015 - 03:05 PM

I went to my family doctor and she sent me for some blood tests, Anti-Nuclear Antibodies and Rheumatoid Factor were negative. How can that be since I have scleroderma? She said the medication my specialist has me on must be working, I said I don't have a specialist yet and am not taking any meds for Scleroderma. Just for symptoms like acid reflux and pain, not to lower my immune system. She had no answer.

My B12 was low and my thyroid was high, but not high enough for intervention.

Any thoughts? Is this normal to have negative results and have scleroderma?

#2 Joelf

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Posted 16 June 2015 - 12:12 AM

Hi Ron,

 

Although very confusing, it is perfectly possible to have Scleroderma and yet have negative bloodwork and vice versa, as many of our members can testify. Amanda is a case in point, although if you see her last post on the subject, you'll see that for the first time since she was diagnosed, she actually does have some positive antibodies.  I actually have the AntiPM/Scl antibody, but thankfully don't appear to have polymyositis (or not so I'd notice! :wink:)

 

The problem with blood testing alone for Scleroderma is that the results of the tests can fluctuate and should never therefore be the sole means of diagnosis; rather all the clinical signs should be taken into account as well. This is what makes Scleroderma such a bizarre disease for the average family doctor to diagnose and treat; my own general practitioner, although an excellent doctor, has very little experience of Scleroderma, as did the local consultant I first saw, but fortunately they didn't have powerful egos either and so thankfully were happy to refer me to a consultant who did know about the disease.

 

All the more reason for consulting a Scleroderma specialist (if possible.)

 

Kind regards,


Jo Frowde
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#3 greypilgrim256

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Posted 16 June 2015 - 02:20 AM

Unfortunately, scleroderma does not have any reliable biomarkers.  Antibodies are a clue, but they do not give the whole picture.  Scleroderma is diagnosed on presentation, not antibodies.  Antibody levels and titers do not correlate to disease activity, which is one of the reasons this disease is so difficult to manage and track. 



#4 Ron

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Posted 16 June 2015 - 02:46 AM

Thanks Jo, I am on a waiting list for a specialist, it could be a year wait.  Very slow here with healthcare.  Still waiting for my CT scan that my request was sent to the hospital 2 months ago, they have still not contacted me.



#5 Amanda Thorpe

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Posted 16 June 2015 - 06:10 AM

Ron,if it doesn't make sense, in the world of scleroderma, it must be so!

For 7 years my ANA was negative and suddenly it is positive. However my SCL-70 (which denotes diffuse scleroderma) is still negative. In addition my rheumatoid factor is also negative and as far as I know, always has been.

Blood work only suggests and supports diagnosis, and because it can be at odds with the disease you have or lab results can show up false positive/false negative, it should never be the basis of diagnosis or lack of. My blood test results, until September 2014 suggested that I am perfectly healthy. Hmm...As nice as you all are, I ain't here just for personalities! I have a disease!

Take care.
Amanda Thorpe
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#6 Margaret

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Posted 18 June 2015 - 12:39 AM

Hi Ron....when my son was 18, he developed almost total esophageal dismotility.  Being an 18 years old male, his gastric doc was surprised and ran blood work.  His ANA was high and + for *speckled patten, diffuse cytoplasmn*, his anti-RNA Polymerase 1/111 was also +..  With his dismotility, major fatigue issues, and hardening of the diaphram , his gastric doc and primary care physician told me he had a rare disease called scleroderma.  Several months later, he saw a specialist who said no to scleroderma because he did not have skin issues or Raynaud's but yes to UCTD....undifferentiated connective tissue disease.  UCTD is still a disease and, over the past 9 yrs,  he has slowly progressed on to Raynaud's and SICCA. He was put on Plaquenil 6 months after initial diagnosis.  Like others have said, the blood work is a guideline.  You can have + blood work and still not have scleroderma, but some other disease similar in symptoms.  Initial internet Googling made me think he would die a quick, gruesome death!  Thankfully, I found this site and he is still around with his humor and smile.

 

Take care, Everyone.

Margaret

Mom to Gareth, 27 years old, DS/ASD



#7 Ron

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Posted 28 June 2015 - 08:33 AM

Here are the extra blood work I need done to get into to see a Scleroderma specialist, this was taken from a form the hospital faxed my family doctor. To see a specialist you need a whole bunch of tests done before you get assigned a doctor.

I have no idea what to make out of these tests:

SD%20TESTS.png

#8 Shelley Ensz

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Posted 28 June 2015 - 10:29 AM

Hi Ron,

That's a normal selection of blood tests for scleroderma. Who knows, at some point blood work might provide additional clues. But overall, clinical symptoms are more important both for diagnosis and for disease management.
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.

#9 Ron

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Posted 28 June 2015 - 01:03 PM

Thanks Shelley. Last time I had scleroderma blood tests done was at the hospital back in 1992, as the labs could not do all the tests at that time. Now the labs can, and are asked to send the results and serum to the diagnostic department at the hospital.

#10 miocean

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Posted 29 June 2015 - 01:57 PM

Ron, How did you get the copy of the script in the post?

 

Thanks,

miocean


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#11 Ron

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Posted 30 June 2015 - 05:18 AM

miocean,

I misread your message, this is how to insert an image, using the editor:

 

Watch this video:
http://screencast.com/t/9FgTPaFzGz6u

Make sure you have the right URL to the image, then use the image tool like in the video and paste it into the box and your image will appear in the post.



#12 miocean

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Posted 30 June 2015 - 12:27 PM

Thank you, Ron. I am using Safari but could also switch to Firefox. The video played choppily but I get the gist. 

 

miocean


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