Everything posted by Cmfc0523
Hi Phyllis, I recently received the same results as you, with very similar symptoms. I have seen a Rheumatologist, as well as had the ‘standard’ Echo and Pulmonary Function tests, all encouraging. Right now, the Rheumatologist has me ‘on paper’ as having Undifferentiated Connective Tissue Disease, and will continue to watch for any new symptoms to point toward Scleroderma. The most important thing she told me was exactly what Jo said, which is that many live long, often uneventful lives, with this disease. And, knowledge is power! You can only treat the things you know about. I found this forum to be a godsend over the past few months also! Cathy
Hello all! I’m hoping for input on some confounding pain. I’m about three months into this journey, and so far my chief complaint has been some joint pain. Most is in the typical places like hands feet and upper back, but I also have this crazy, random pain in my upper chest. I should note that I had both an Echo and PFT 3 weeks ago and both were great. My doctors don’t seem to think it’s significant, but it is irritating and a bit painful at times, not to mention a little unsettling since it is my chest. It seems to come and go like my back, with no real trigger, except it does seem to get a little worse with activity, as the day wears on or even after a lot of talking. Exercise or heavy breathing does not make it worse. Has anyone experienced something like this? Could it be something akin to muscle and joint pain? Is there something more serious that I should be asking my doctor about? I’m just not sure where to go with this one. I did start Plaquenil recently, which I understand could be helpful but will take awhile to feel benefits. Any thoughts or personal experience is greatly appreciated, because I’m stumped! Cathy
I know this is difficult to answer, but I would really love to have some input on what lung involvement and shortness of breath ‘feels like’. Two weeks ago my Rheumatologist confirmed that I am ACA positive for Anticentromere B. I originally saw her for mild but symmetrical joint pain and sore shoulders, so she suspects Sine Scleroderma and referred me for an ECHO and pulmonary function tests (PFT). I had the ECHO yesterday and was told that if I hadn’t heard anything by now, no news is good news. Yay! But since I got the call two weeks ago, vague symptoms seem to have become a really big deal. I have an intermittent dry cough, but nothing major and not before a few weeks ago when I had a touch of a cold. I’ve woken up coughing, but it feels much more like a reflux cough that I’ve had for years. I don’t get winded with exertion, yet I do have a sensation that I need to yawn and take big breaths, mostly when I’m thinking about it (which seems to be all the time!) When I wake up at night, I feel like I need to make myself breathe, like a panic attack, and then can never get back to sleep. And I have a pain in the middle of my chest that seems to come and go. My PFT is not for two weeks, so I am going out of my mind with anxiety, to the point where I’m nightly considering going to the ER. Any thoughts, information and/or assurances is much appreciated. Oh, and I am so grateful to have found this site, I’ve scoured it and have learned so much!