I'm not sure of a direct percentage perse, but I know it's possible to have Lupus and the serology not confirm it. So it would stand to reason to me the same could hold true for scleroderma. For years, a classmate of mine suffered with all the classic symptoms of Lupus, but her serologies kept coming back negative and she was referred to psychology, but she had symptoms they could not ignore. Fortunately, her rheumatologist tried her on prednisone, methotrexate, and Plaquenil intermittently and during those times her symptoms would improve. She was finally diagnosed after a terrible flare when her serologies did come back positive. I would suggest retesting intermittently if you know for sure something is going on. These diseases are so hard to diagnose!
I have been dealing with some type of auto-immune disease for about 6 years. My original blood work was positive for ANA as well as the scleroderma 70 antibody. I have never again tested positive for scleroderma, but my labwork changes all the time. Sometimes the ANA is positive, sometimes not. I have seen 5 rheumatologists and they all have different opinions. I have been on every med available and the only thing that really makes me feel better is prednisone.
I guess what I am saying is that your lab values can change and you can still have one of these autoimmune diseases even though the labwork is negative at any given time. Did they run the scleroderma test? I would just find a good rheumatologist and keep trying to find an answer. Sorry I couldn't help much. Good luck.
I was just told that I have a positive ANA so they looked for other auto immune diseases other than lupus (which I am diagnosed as having mildly as well as Raynaulds). They found PBC (primary Biliary Cirrosis).
This may not be so in your case but with the relevent tests, the powers that be will diagnose you accordingly. Its just that many of the auto immune symptoms display so many of the same or similar charactoristics.
After a major flare up and finding that I also had a positive AMA, it was found that I also have auto immune hepititis which is quite advances. This was a complete surprise but I must say that after being given the appropriate meds for this condition, I have not only stabilised but have also been feeling a whole lot better for now.
No one knows how long this will last but the consultants are vigilant and once they are on your case, they will endeavour to crack it!!!
One piece of advise though, it would not hurt to keep a diary of events stating how you are feeling that day, aches, dry eyes, itching, night sweats, nausea, any thing at all. This information is very helpful to the consultant.
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