Looking for help. in Sclero Forums (MAIN) Posted January 17, 2016 Hi Mare, I am delighted that you were able to consult a scleroderma expert. I know what it is like to wait for test results, sometimes it feels like half my life has been spent waiting for one result or another! This might be a good time to read through forum archives of members who have been waiting for the results of this test or that, or this diagnosis or that, over the years, as many helpful hints for dealing with this phase are lounging about. Most of us will say that the time between onset of symptoms and diagnosis was the absolute worst time for us ever in dealing with the disease. By comparison, it's a piece of cake to deal with any eventual diagnosis. I just need to warn you that it is an average of six years from onset to diagnosis of scleroderma. Sometimes the process is speeded up a bit by seeing an expert right away (which is why we strongly recommend it whenever there is good suspicion of scleroderma). BUT the disease itself can onset very slowly, can be similar to a great many other illnesses, and can take years and sometimes even decades to firmly declare itself. It hardly ever happens for a person to see an expert once and then voila, have a diagnosis of scleroderma. It is much more normal for someone to slog through years and years of tests and follow-ups and differing opinions and just general mass confusion. I mention this in hopes that this tampers your expectations, both for yourself and for your rheumatologist. They cannot create a diagnosis out of thin air, even when they strongly suspect one. It is just as much a waiting game for them as it is for us. And if their response right now is that it is too soon to tell precisely what you have, please do not be discouraged. Many of us here know how it is to be terribly ill, to want and need immediate answers, and to be frustrated at every turn in the road. But in those cases, neither the patient nor the doctor are at fault, but rather those extremely pesky autoimmune diseases which are often extremely challenging to diagnose. I'm not saying you won't get a diagnosis, but only that it would actually be pretty unusual if you get firm answers, this soon after onset.