I'm New Here - 15 Years and No Diagnosis! in Sclero Forums (MAIN) Posted June 19, 2016 Hi Wilson, I do know, in many ways, what you are feeling, as I've suffered extremely delayed diagnoses over the years. Several times, I've felt completely exasperated by it. At one point, I read that about 40% of lupus cases were diagnosed by autopsy. I really don't know if that is true or not, as I haven't found that reference since. What I do remember though is that I adopted as my slogan, "I refuse to be diagnosed by autopsy!" Sometimes that rallying cry was the only thing that got me out of bed or gave me the courage to face yet another test. It's taken literally a lifetime for me to be mostly diagnosed, as I have multiple autoimmune syndrome (MAS) with all sorts of overlaps, which has been endlessly confusing both for me and my doctors. So, on that hand, I know how extremely difficult some autoimmune diseases can be to get properly diagnosed. On the other hand, my late husband had a variety of things that emulated scleroderma, yet beyond the shadow of a doubt he did not have scleroderma or any autoimmune disease. He had alpha-1-antitrypsin deficiency (A1A) which caused him to have severe lung problems at a young age. Eventually he had a lung transplant. So he was on oxygen for many years. But other than that, he also had severe esophageal ulcers and strictures, and had to have his throat stretched regularly. His heartburn was so severe that he had to have Nissen Fundoplication surgery. He had severe sleep apnea; costochondritis; atrial fibrillation; short-term insulin dependent diabetes from prednisone; osteoporosis; recurrent cellulitis; collapsed lung; ruptured Achilles tendon; and even Dupuytren's contractures in both hands. Everything other than the lung involvement was due to either the usual effects of aging or the side effects of medications. There was absolutely nothing (other than A1A) systemically wrong with him, and I can assure you that every test known to man was run prior to his transplant. So it's kind of funny. People can have only a few little things wrong with them but clearly have an autoimmune disease but a rosy prognosis, yet others can have dozens, of things wrong with them at once and not have any underlying disease process that is driving it -- other than aging, which is a mighty adversary all by itself, never to be underestimated. Please keep in mind that it is NO LESS SICK (and certainly, no less important) to have symptoms without a cohesive underlying illness, than it is to have the same symptoms without such an illness. Maybe the prognosis is sometimes better for people without an underlying illness. But all of us, healthy or not, have one thing in common which is that we suffer from a condition called Life, which is always, and inevitably, and unpredictably, fatal, whether by disease or accident or foul play. I suppose in the end, all of us actually get our final diagnosis by autopsy. But oh, so little, and so absurdly late! It is today that we wish to know exactly what ails us, so that we can thus try to thwart our final diagnosis by a few days or weeks or months or years with proper care. Hopefully through our Sclero Forums, we will all find the strength to face another day with courage, with grace, with laughter...whether with or without any particular diagnosis at the moment, knowing that we all share the prognosis of Life together, along with all of its joys and blessings, and uncertainties.