I am new here and excited to be able to post a message. Yes, my subject line was not wrong - I can hardly believe it myself that it has been 15 years and still no diagnosis.
It was 15 years ago I developed Raynaud's, heart arrhythmia's, esophagus spasms, and a bunch of other symptoms consistent with scleroderma or a similar disease. I received several individual diagnoses of these things throughout the years but never a unifying diagnosis of an underlying disease. Throughout this time my bloodwork has always been completely negative and I have no skin thickening - yet the disease is still there. Unfortunately now after all these years I am concerned that some organ damage is showing up on my test results. I recently had an echocardiogram that showed that my left atrial is enlarged and the filling pressure on the left side of my heart is borderline-high. Although my doctor stopped short of saying I definitely had diastolic dysfunction, from my research it sounds like DD is certainly possible. Also, over the years my kidney blood urea nitrogen levels have gradually and steadily risen and were now at 20 at last check - which is at the absolute top-most normal value and is up from a reading of 7 or 8 when this all started years ago. I am very thirsty and my face feels puffy when I wake up in the morning.
For my first few years it was very difficult mentally for me to be living with an honest-to-goodness disease that could not be found or diagnosed medically. Ultimately though and over time, I reluctantly accepted this fact and just tried to ignore my symptoms as much as possible. But now with test results showing possible heart and kidney damage, it is pretty hard to just ignore it anymore. After all - how can they find the damage the disease is doing but not find the disease itself! I am an adult male so if I have scleroderma or a related disease I am already in a minority by a long shot! If, on top of that, I have only the internal form of scleroderma which also happens to be completely negative on all blood tests - then good grief how unlucky would I have to be for all of that to be true! My chances of winning the lottery are probably 1,000 times better than that!
I guess I just wanted to introduce myself and share my story. I know there are many other people on this site who physically have had things much tougher than I because despite my ailments, overall I do not feel too bad. My biggest challenge so far has been the mental side of things - living with a chronic disease that defies diagnosis. Without that diagnosis, my doctors do not and cannot connect the dots with respect to my various problems (Raynauds...heart...esophagus...etc.). And without that diagnosis I cannot definitely tell any family or friends what is wrong with me - that there actually is a name for what is happening to me!
Thanks for listening and thanks for this website. If anyone can relate to my predicament, I'd love to hear from you. Also, it is hard not to be fearful of the future when you know your heart is enlarged from this disease. Does anyone know if you can still live a long time with an enlarged heart or diastolic dysfunction - if that is what this turns out to be?