hello my name is Kirsty and I'm 16 years old.
I have suffered from Dermatomyositis since I was nearly 3 years old. The disease has burnt itself out now however the disease has left me with weakness and I am now wheelchair bound.
I am always interested in hearing from anybody with Dermtomyositis or Polymyositis as since the diseases are rare it is always interesting to hear about various cases.
If you have the disease or a child with the disease I would be delighted to hear from you.
I was recently diagnosed with Polymyositis at age 36. I woke up one morning and felt as if I had been hit by a truck. Every muscle was killing me. It took me a week before I went to the doctor and when I did my CPK levels were at 39,000! I spent a week in the hospital. The Prednisone worked wonderfully and I started the Methotrexate 3 weeks ago and am getting off the steriod. After 2 months I have regained my strength and am almost 100%. It remains to be seen if the Methotrexate will work as well as the Prednisone but I am crossing my fingers. No one knows when they will have a relapse and I live every day as if it never will. I'm sorry to hear about your condition. I have a friend who was diagnosed with Inclusive Body Myositis...I know, both are so rare it's weird to know someone else with almost the same thing.
My father was just diagnosed with inclusive body myositis. I am just looking for any firsthand knowledge of the disease. We know it is rare, untreatable and not much more. Does anyone have any information? Thanks so much.
Last edited by SheShe40; 03-21-2008 at 02:34 PM.
Reason: messed up