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Myositis Message Board


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Old 08-27-2001, 04:38 AM   #1
Join Date: Aug 2001
Location: clearfield pa usa
Posts: 1
shirbarr HB User
Post hello

just joined this board today. Anyone wanting t contact me by e mail for myositis talk feel free to do so. [email protected]

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Old 09-21-2001, 06:57 PM   #2
Join Date: Nov 2000
Location: US
Posts: 407
cutenbrat HB User

just curious on what mytositis is?????? I have never heard of it before.
God Bless.

Old 10-26-2001, 09:24 PM   #3
Join Date: May 2001
Location: Riverside, Calif.
Posts: 5
anzavic HB User

Myositis is a rare muscle disease that causes muscle wasting and a great deal of fatigue. Dermatomyositis also has a rash associated with it.

Old 06-21-2002, 03:47 PM   #4
Junior Member
Join Date: Jun 2002
Location: Manchester, England
Posts: 24
Kirsty HB User

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

Old 07-07-2006, 08:31 AM   #5
Join Date: Jun 2006
Location: Rochester, NY
Posts: 9
tschreib1 HB User
Re: hello

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.


Old 08-17-2006, 08:55 AM   #6
Join Date: Aug 2006
Posts: 1
boblenobbs HB User
Re: hello

Dobule posted - please delete

Last edited by boblenobbs; 08-17-2006 at 08:56 AM.

Old 03-21-2008, 01:29 PM   #7
Join Date: Mar 2008
Location: Ashland KY USA
Posts: 1
SheShe40 HB User
Re: hello

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 01:34 PM. Reason: messed up

Old 03-25-2008, 09:21 PM   #8
Join Date: Mar 2008
Location: China
Posts: 4
onthink11 HB User
Re: hello

I have seen it somewhere else.

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