Yes, I think you have assessed it correctly. Keep in mind, though that you can't be diagnosed on antibodies alone. What else is happening?

So nearly all of the symptoms seem to be Sjogren's like. It started out in April '10 with pain below the chin, then deep in the teeth, move to the jaw, the sinuses. It would move around. Sometimes the intensity would get extreme like 9 out of 10 and I couldn't sleep to escape. Then later it moved to the neck and the back and the hip. Eventually most of the back and hip symptoms went away and at this point it is primarily in the jaw and face though sometimes I can feel muscle aches elsewhere. Work stress seems to trigger flares. Staying up to late brings them on too. Swimming can get me feeling like normal but I gave up my membership. Bicycling seems like it can help too if I go an hour or more. My sleep is restorative and as I type this feel quite good except for some jaw soreness. By 6pm I will probably feel sore in the jaw, face, back of neck. If I eat something I will sometimes feel better.

Zerenitynow, I have the limited systemic scleroderma. Diagnosed last year by one of the nation's top scleroderma specialists, even though I have no skin hardening. I think I may be one of those few sine scleroderma cases in which there is never any significant skin hardening. But my heart, pulmonary vessels, GI tract, and other things are affected. And my lungs are starting to have reduced diffusion capacity (DLCO). I have the anticentromere B antibodies.

Some of my first symptoms were fibromyalgia-like aches and pains, tendonitis, rotator cuff (shoulder) syndrome, and neuropathic pain.

With SCL70 most people have a rather sudden onset of symptoms, but some people don't. I know that at Johns Hopkins they have turned away a number of SCL-70 patients, saying they were "false-positive." I went there myself, and was told it was only "Undifferentiated Connective Tissue Disease with features of scleroderma" because I did not have any skin hardening. Then, just 2 months later I went to a second specialist and she diagnosed me immediately despite the lack of skin hardening. So some people are sticking strictly to the old 1980 ACR criteria, while others are adopting the newer 2001 Medsger criteria.

Thank you very much Gardener21 for the detailed information. We have a couple of specialist clinics here in the San Francisco area. Stanford has one in Redwood City and there one at UCSF. Unfortunately it looks from their web site that Stanford does not take my insurance. Too bad as the specialist appears to be very highly rated in health grades and yelp.

Hi Gardener. BTW - how did they determine that your heart, pulmonary vessels, GI tract and lungs were being affected?

Hi, ZerenityNow,

The heart problem (stage 2 left ventricular diastolic dysfunction) was picked up by an echocardiogram that included among other things an assessment of heart chamber functions. The EKG has always been totally normal.

The exercise-induced pulmonary venous hypertension (PVH) was picked up by an exercise echocardiogram. It also showed borderline PVH at rest.

Years ago I had a barium study which showed a hiatal hernia. An endoscopy with biopsy in about 2007 was normal, but they were just looking to confirm or rule out celiac disease. Since then I've had no GI testing, but I know I can feel food rising in my esophagus when I bend over. I can also wake with heartburn. So my doctor has prescribed omeprazole for me and it helps. As for the lower GI tract, I have constipation alternating with diarreah. That's why a few years back I was being checked for celiac disease. I now use stool softeners daily to keep things moving. Before that I would get impactions so bad I would break open and bleed. That can still happen if I forget to take the stool softener (docusate).

As for the lungs, I had a pulmonary function test that showed that my lungs' diffusion capacity (DLCO) is down to 78% of expected for my age. The year before it was 98% of expected. My lung volumes are excellent, however, which means that the reduced DLCO is due to the pulmonary veneous hypertension. The pulmonary venous hypertension in turn is due to the heart dysfunction. Cascading effect.

A PET/CT scan (done to investigate a bone lesion) incidentally revealed that I had thyroiditis. A blood test followup of that showed hypothyroidism.

The same PET/CT scan also showed an inflamed liver. That can happen with the anticentromere B antibodies also.

P.S. the echocardiogram is not definitive for diagnosing pulmonary hypertension, so it had to be followed up with an exercise right heart catheterization, which confirmed it.

Thank you so much for all the test information. I haven't gotten to any of those yet.

The echogram and pulmonary function tests are pretty much done yearly for scleroderma patients by scleroderma specialists. At this point few scleroderma docs will diagnose you YET because of lack of skin hardening. One who MIGHT is Virginia Steen, in D.C., because I think she goes by Leroy and Medsger's criteria. But even if you do get diagnosis, it may be too early to treat you for anything but the peripheral effects of scleroderma, such as GERD's and Raynaud's. People with SCL-70 don't as often get Pulmonary Hypertension as people with anticentromere.
But, conversely people with SCL-70 do get more intersitial lung disease (ILD) and renal crisis, so it will be important for them to monitor you for that, and for you to test your blood pressure at least weekly. The blood pressure shoots up in renal crisis. Buy a blood pressure machine ot have at home. Use it regularly!

Thank you again. I have just been puzzled how all of my other blood tests came out clean. My PCP just additionally ran CRP and ESR and those were clean. Oxygen content, liver enzymes all good. All organs good. BP good. Biking in the hills, swimming ok. Even my sugar was good. I was expecting bad news there because type 2 runs in my family.

It helps to know the areas of which to be most aware. So the symptoms at this point are mostly TMJD-like with neurpoathies that can pop up all over. Only five days to go to visit the Rheum.

ALL OF THOSE VALUES are normal in me also even though my ANA runs up to 1:2560 and my anticentromere antibodies are above what LabCorp can measure! I also have no skin hardening. And yet I have multiple internal organ effects (heart, lungs, PVH, liver, esophagus and colon), Raynaud's, nailfold capillary changes typical of scleroderma, loss of hair on the limbs, neuropathic pain, myalgias, tendonitis, adhesive capsulitis and more.

For many years my ESR, and sed rate used to run 2-3 times the normal max, but since I started taking fish oil and alpha lipoic acid, they have normalized. But it has not brought down my ANA nor my anticentromere values.