Millefleur

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Everything posted by Millefleur

  1. Can anyone recommend a good rheumatologist with expertise in scleroderma in the Sacramento area? I'm especially interested in finding one in the U.C. Davis medical system. Thanks!
  2. You gave a link to "Interpretation of Pulmonary Function Tests" in this posting that is no longer functioning. Do you know the website? I am very interested in this topic and would love to see what the link said. Thank you.
  3. Hi, I am worried I might be developing pulmonary fibrosis. I had one slightly abnormal PFT, then a normal one, and a CT lung scan which showed some fibrosis, which a pulmonologist says "everyone has." (He knows nothing about scleroderma). I also am not diagnosed with scleroderma - just early connective tissue disease. My mother died of PF and Pulmonary Hypertension from scleroderma. I have intermittent breathing problems which became quite noticeable last spring. In late winter they seemed improved. I began an exercise and diet program in March, thinking perhaps I was just unfit, and am now close to a normal weight and much more fit. The breathing difficulties upon exertion are back and I get winded in my exercise class. I get very out of breath when I exert myself past a certain point. I notice it also when I bend down and stand up. Did anyone with pulmonary issues experienced changes in their symptoms in the early stages - worse some days or months, and other times not so noticeable? Thank you, and my hat is off to all of you struggling with this difficult disease.
  4. Thank you all for your suggestions. I just completed another pulmonary function test and am pursuing answers.
  5. Thank you, Peggy, and I hope your infection cleared up.
  6. I have seen a scleroderma specialist. I do not test positive for SCL and have no outward symptoms and she diagnosed me with primary Raynaud's. She said it is rare for a mother and daughter to both have scleroderma, but something is wrong with me and I think it is more than primary Raynaud's. My mother had sine scleroderma for years without knowing it because she had no outward symptoms. She kept getting more and more out of breath and no one could figure out why. Eventually she developed pulmonary fibrosis, pulmonary hypertension, and cardiomyopathy. She was diagnosed one week before she died when someone finally tested her for autoimmune diseases. I got Raynaud's about 20 years ago. Seven years ago I got severe achy joints and shooting pains and lots of fatigues. This lasted four to five months than went away. My ANA tested positive. Then I got occasional "flares" of these symptoms until last year when I developed a noticeable shortness of breath upon exertion, and reflux. Currently I feel fatigued all day, even when I wake up. When exercising I rest between each weight machine because I run out of breath. Can anyone recommend a specialist in the Sacramento CA area? I am hesitant to return to the specialist I saw because I didn't feel that she took my symptoms too seriously. Also, is it possible to have these breathing issues wax and wane? My shortness of breath has gotten worse in the last month, but it did this last year than slowly seemed to somewhat improve.
  7. Constance, I'm sorry to read of your concerns. I am going through diagnosis myself, with some pretty scary findings. It is difficult. Have you checked to see if there is a support group in your town? Good luck, Millefleur
  8. Hi, I am brand new to this site and waiting to be diagnosed. I am afraid I am scleroderma sine sclerosis. Have had positive ANA for 6 years,along with various aches, arthritic episodes. Only recently, in 2008, following the death of my mother did more symptoms show up: swelling fingers, reflux, and dyspnea. I've had Reynaud's for years - long before the other symptoms. Recent (1 week ago) CT scan shows interstitial lung fibrosis. This shocked me. Monday, Dec. 1 - an echo is scheduled to rule out pulmonary hypertention. A week or so after that I see a pulmonologist for the first time. Everyday chores are now making me slightly out of breath. My mother died of scleroderma sine sclerosis. She was diagnosed a week before she died of heart and lung failure (PAH and lung fibrosis). Her death was somewhat quick, unexpected, and the reason was shocking. I am trying to stay positive but don't know how to get my mind around this. Saw a rheumatologist just once so far, in Sept.; took this long to get these tests scheduled. I am scared and dreading the next few weeks of diagnostic tests. I seem to be following in my mother's footsteps. I have no supports in place, other than my husband who is also trying to come to grips with this. This is all happening too quickly. Advice?