I'm glad your endoscopy and colonoscopy results were good, however I do understand as well the consternation in wanting some answers.
Try to remember that even when people have scleroderma diagnosed, it is easy to stay with the thinking that the sky is going to fall "any day now", whereas many, perhaps even most, of us keep on with things pretty much the same for years, and years, even decades in some cases. One of my friends had systemic for about 50 years before she passed away from it.
Roughly 50% of people with symptoms of connective tissue disease never go on to develop a full-blown, diagnosable illness. Ever! Even with diagnosed systemic sclerosis, people often go into remission naturally and sometimes their symptoms even clear up, without any treatment at all. So you might be dreading something that will never come to pass. Progression is not inevitable. In fact, it might be just as likely that your health remains the same, or even improves.
What would you do differently, if you knew, right now, that you were one of those 50% who never got any worse than you are right this moment? I'm sure you wouldn't skip out on your annual screenings, just to be on the safe side. But would you be taking up a new hobby, calling a friend for lunch, adopting a pet, volunteering some place, taking a night class?
I'm sure you'd be the first to tell me that worrying about things won't make them come to pass, nor will it help to avoid them, either. And when we learn how to handle worry (by focusing more effort on things like fun and hobbies), it also helps us down the road when we are inevitably faced with even bigger challenges.
Oh dear. I probably didn't help at all, did I? But all I know is that worrying about getting diagnosed is no different than worrying about something after it is finally diagnosed, and when you figure then our worst fears have even been confirmed so if we are inclined to worry, we can have a real field day then, and it's a lie when we tell ourselves, "I'll feel better when I'm finally diagnosed!"
No. We will not. Most of us wish we'd used our pre-diagnosis time a lot more productively, however we didn't have the benefit of someone else telling us that worry is worry is worry, no matter what the outward circumstances, no matter whether it's "justified" or not, worry is worry is worry.
I've lost count of the times that I have learned the hard way that worry is always optional. Even for people with scleroderma! Even for people with SCL-70 antibodies and sincere concern about scleroderma. An article I like on this subject is from Psychology Today, Give up Worry by Recognizing it as a Bad Habit.
One of my favorite lines in there is, "The key is to accept that every thought that crosses through your mind is not necessarily true."
What's your favorite line in that article? Did you find any of it helpful?
Please remember, you can get through this. You have us, and we know what you are going through, and we want to help lighten your load.