It has been a long time since I've been on the forum site. I have been dealing with things quite well, at least I thought I was.
I have a diagnosis of Undifferentiated Connective Tissue Disease with possible Sjogrens and Scleroderma. I was recently at my rheumatologist appointment when I mentioned that I had had a very irregular heart beat during my colonoscopy. My primary care doctor had ordered an echocardiogram which he then said came back fine and not to worry about things. I have been having slight breathlessness as I hike around campus to class and recently had to tell my daughter to walk slower when we were out together. Usually they were telling me to slow down.
The rheumatologist looked at the echo report, and said that it indicates that there is a possibility of pulmonary hypertension, pulmonary arterial hypertension. He has ordered another echo and PFT tests. My last PFT was 2 years ago since last year the rheumatologist didn't think I needed one. Also may end up with heart cath if needed. There is one pulmonologist at the hospital I go to that specializes in PH/PAH so if I need a heart cath I'm going to see if I can get a referral to him. My rheumy said that my primary care doctor wouldn't have known what to look for.
Anyway, this is really getting to me. I have come to terms with most of the issues I have and I really felt that I was managing well. I have very little as far as skin changes, just some tight facial skin and smooth fingers and palms. I don't want to jump to conclusions just yet, but this is quite a blow. While I have escaped many issues that a patient with scleroderma must deal with, I may have an issue that changes the whole picture.
So, thanks for a little venting. Also, make sure that you see your rheumatologist regularly and that they know connective tissue disease issues or this kind of thing could go unnoticed.