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08/13/2010 07:33 AM

Previously "lupus suspect" now firmly scleroderma

Posts: 417

Hi all,

From 1997 to this year I was a lupus suspect, but I have been gradually developing signs of scleroderma, even though I still have absolutely no skin hardening. I now have GERD, Raynaud's, huffing and puffing, constipation, food lingering in the esophagus, and narrowed opening into the back of the throat causing obstructive sleep apnea, and most recently it was discovered that my left ventrical of my heart is stiffening. They discovered the anticentromere B antibodies were quite high, and now absolutely off-the-chart high. This week I finally went to Dr. Virginia Steen, who a couple of weeks ago was named "Doctor of the Year" by the Scleroderma Foundation. She found that I have the changes in the nailfold capillaries that are only found in scleroderma.

The diagnosis does not make my illness worse than it already is. It is what it is! But having a proper label on it means that I can be treated appropriately and don't need to be treated with drugs that are effective for other autoimmune disease, but NOT effective for scleroderma!

So if you have any of the above symptoms, consider asking for the anticentromere B test. It's NOT on the regular ENA panel done usually when the ANA is positive. It has to be ordered separately. That's why it took so many years for me to get diagnosed.

I am leaving this group now, but my thoughts are with you. I'll be hanging out in the scleroderma group. I hope you don't end up having to join me there, but if you do, know that you'll be hugged, and welcomed.


08/13/2010 07:47 AM
Posts: 2019
Senior Member

Wow, I'm glad you have FINALLY received the correct diagnosis! I went through 5 years of being misdiagnosed for what turned out to be a birth defect of my esophageal sphincter! It is not fun to be treated with tons of meds for problems it turned out I didn't have. I hope that your treatment plan for the scleroderma goes well and gets you feeling better quickly.

Take Care,



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