shirbarr
08-27-2001, 08:38 AM
just joined this board today. Anyone wanting t contact me by e mail for myositis talk feel free to do so. shirbarr@pennswoods.net
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cutenbrat
09-21-2001, 10:57 PM
just curious on what mytositis is?????? I have never heard of it before.
God Bless.
God Bless.
anzavic
10-27-2001, 01:24 AM
Myositis is a rare muscle disease that causes muscle wasting and a great deal of fatigue. Dermatomyositis also has a rash associated with it.
Kirsty
06-21-2002, 07:47 PM
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.
With regards, Kirsty Phillips
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.
With regards, Kirsty Phillips
tschreib1
07-07-2006, 12:31 PM
Kirsty -
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.
Tina
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.
Tina
boblenobbs
08-17-2006, 12:55 PM
Dobule posted - please delete
SheShe40
03-21-2008, 05:29 PM
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.
onthink11
03-26-2008, 01:21 AM
I have seen it somewhere else.