I stumbled upon this site today when searching for information regarding scleroderma. I was diagnosed with dermatomysitis in 2007. Through the progression of the dermatomyositis and moving back to the small town I had grown up in, finding medical care for a rare disease has been difficult.
I recently discovered we had a Rheumatologist in town and was able to get in to him. He was very concerned as I hadn't been treated for the dermatomyositis in many years, in spite of the progression. I had also been diagnosed with Raynauds phenomenon years ago. With the progression, I have been dealing with swallowing problems, bowel issues, significant muscle weakness etc.. He ran a lot of lab work as well as examination and discovered I also have scleroderma.
He wants to start treatment as soon as possible to try to slow things down. I do have lung disease as well, so he had me see my pulmonologist as well to make sure it was safe to start treatment. We are all working as a team, and said they will be watching me closely.
Right now I am not sure how to feel. I am an emotionally strong person, and have already known I was dealing with a rare, progressive, non curable disease, being dermatomyositis. I keep pushing forward, and adjusting my activities along the way.
I guess I need to know I'm not alone. To be able to talk things through with others who may be experiencing the same things.
Thanks for taking the time to read this through.