Nance, as I understand it, DM can attack your lungs, muscles, and your skin. I am dealing with all of them. I was diagnosed with Dermatomyositis with MDA5 antigens and Interstitial Lung disease. ILD has caused scarring of my lungs, the damage can’t be reversed, my hope is to prevent it from progressing. The muscle weakness is caused by inflammation, I don’t have trouble walking, or issues with my hips or thighs. Sometimes my lower body, mostly my legs feel weak. Maybe because I was put on prednisone as soon as I got the diagnosis, the inflammation has been keep under control. I went to my pulmonary specialist today for a follow up since my appointment at Mayo Clinic, it was all good news, and I have hope that the treatment I am on for ILD is working. So I will continue with my current treatment, unless things progress. My doctors recommend I have Pulmonary Function Test every 3 to 4 months, this will show if things have progressed. So my doctors are monitoring me closely with ILD, and watching for inflammation which will cause issues with my muscles. The skin rash I can live with. Nance I hope this information is helpful to you, I have learned a lot since my diagnosis. Most days I feel pretty good, and I have been living my life just like before DM. I feel very fortunate to have such great doctors, My Primary Doctor, Rheumatologist and Pulmonologist. I was quickly and properly diagnosed, and then aggressively treated.
Kathryn