I became sick in about 1997 and was discovered to be running an ANA titre of 1:2560. After doing extensive searches of the pubmed.gov database, I came to the conclusion that there are really only two things that ever drive the ANA up that high: lupus and scleroderma. My first doc said I was a lupus suspect, but finally the ANA pattern showed up as anticentromere, which is supposed to be specific to limited systemic sclerosis (limited systemic scleroderma, formerly known as CREST syndrome). That doc left for another state without following up on that clue, because basically, although I had developed puffy fingers, I didn't "look" like I had scleroderma.

The second doc was convinced that I had lupus, even though I knew I did not fit the criteria. What's more, lupus is supposed to depress complement, while scleroderma elevates it. My complement was elevated.

To make a long story short, the docs were still using an archaic set of criteria (from 1980), that did not recognize sine scleroderma. When a worldwide consortium of scleroderma docs finally revised the criteria in 2012, I was finally able to be diagnosed with limited systemic sclerosis (sine type). In this new set of criteria, my puffy fingers played a big part in the diagnosis. But by then I also had Raynaud's, and the typical nailfold capillary changes that could be seen with capillaroscopy. These things together with my anticentromere antibodies gave me 12 points toward diagnosis. Only 9 points are needed for a definitive diagnosis. So, even though I don't "look" like I have scleroderma, I do have it. It has stiffened my heart muscle, giving me left ventricular diastolic dysfunction and secondary to that, pulmonary venous hypertension. I must now sleep on a wedge to prevent gastric reflux. It affects the GI tract, so I alternate between constipation and diarrhea, with lots of flatulence. It has attacked my thyroid, causing hypothyroidism, weight gain, and with that, obstructive sleep apnea. It has attacked my tear glands, causing severe dry eyes. It has attacked my eyes, too, causing multiple episodes of bilateral acute anterior uveitis. I have antiphospholipid antibodies and episodes of livedo reticularis if I get chilly. I am now very careful to stay warm to avoid blood sludging and clots. I have had soft tissue arthritis in my hands, and elbows. Basically tendonitis all over. I have had frozen shoulder, first in the right shoulder and much later in the left shoulder. More recently it has affected my kidneys, putting me into stage 3 CKD. Since the very beginning I have had prickling pain in my arms and lower legs. This neuropathic pain is pretty constant.

So, what I am saying is that even if you don't LOOK like you have scleroderma, you may still have it, and since it's such a rare disease, there are probably still many rheumatologists out there who are unaware of the newer criteria. The newer criteria may be seen by Googling " 2012 scleroderma criteria" and switching to images, where you can see point charts showing how many points each criteria is given. If you don't really fit the criteria for lupus, I'd recommend getting yourself to a major scleroderma center, like at Johns Hopkins (Dr. Laura Hummers) or at Georgetown University Medical center (Dr. Virginia Steen).

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