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Darkanian

Scleroderma Pm/Scl Antibodies and Other diagnosis.

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In 2012 I developed short fiber neuropathy and later I started developing Raynaud's and then the short fiber neuropathy progressed into polyneuropathy. My neurologist referred me to a Rheumatologist because I was starting to develop joint pain and then the Rheumatologist ran some tests and I had a positive ANA and she ran more tests and it was nucleolar, but she ran an scl-70 Ab and it turned out negative. But, she pursued no other antibodies.

 

Until 6 years later, which by this time I had been on methotrexate for the whole time because she was treating me for UCTD. Then, about two months ago, she decided to run a Comprehensive Scleroderma Ab Panel and realized that I had a positive anti- RNP III Ab at 58 which is moderately positive and a anti pm/scl Ab which was positive as well . She referred me to the Medical University of South Carolina (MUSC) and I was seen pretty quickly the next month. I was shocked when they ran my blood tests only to show everything was negative with the exception of anti-pm/scl Ab.

 

How can that be ? How does that happen so quickly ? I have so many symptoms . I have a small amount of pulmonary fibrosis, a small amount of sclerotic tissue in my heart, a lot of gi issues, rashes on my face for which I have cortisone cream and they did notice under microscope some blood vessels that were abnormal. Yet, the Doctor there said "no you are not textbook and you do not have interstitial lung disease, so you are fine". I am amazed that your blood can go and change like that ? I guess I am concerned . And maybe puzzled about my condition . 

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Good morning, the same thing happened with my son and his blood work.  If you read many of the threads throughout the forum, there are people with full blown scleroderma symptoms and negative blood work and visa versa.  Many times, it will depend on the lab where the blood is sent. Gareth has had 3 + anti-RNA 111 from one lab in Ca, but it was negative from the lab the specialist uses. 

 

The important thing is being treated for the symptoms, which you said you were.  Gareth's original doctors said sine scleroderma but the specialist says UCTD.  Either way, he's being treating for the

symptoms and both diseases can cause extensive medical issues.  

 

Take care, everyone.

Margaret

Mom to Gareth, 30 years old, DS/ASD

 

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Hi Darkanian,

 

Welcome to these forums!

 

I'm sorry to hear that you're experiencing unpleasant symptoms and have had worrying blood test results. As Margaret has advised, the blood tests can vary tremendously and they are really only a baseline to start the diagnostic process. Positive blood test results are a favourite subject on the Forums (queries regarding them pop up at least once or twice a week and we have numerous threads about them) and they do cause a lot of unnecessary worry and anxiety to our members, particularly newbies. I would reiterate the advice we always give about positive blood tests; although they help in the diagnostic process, they are by no means the be all and end all of a diagnosis, as scleroderma is extremely complex to diagnose and it is possible to have positive blood tests and yet never go on to develop the full blown disease and vice versa, as many of our members can testify.

 

I can understand how worrying these test results appear to be, but the best person to explain the test results as they interpret them in your particular case is your doctor or rheumatologist. As you are suffering with quite a few symptoms as well, I would suggest that you go back to your doctor for possible further testing and a more satisfactory explanation (telling you that your symptoms are not textbook smacks of stating the obvious; because of the very diverse nature of the disease, very few scleroderma patients are "textbook cases". :wink: ) We do actually recommend that our members, if possible, consult a listed scleroderma expert, to ensure that this complicated disease is treated correctly, by someone with the correct knowledge and expertise.

 

I've included a link to our medical page on Antibodies in Systemic Scleroderma, which I hope you'll find helpful and informative.

 

Kind regards,


Jo Frowde

ISN Board Member

ISN Secretary of the Board

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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