The Myositis Association, Patient stories, Inclusion body myositis

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John Mozer, Aurora, Colorado living with Inclusion Body Myositis.

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💻 Originally aired 2014.
  1. The Myositis Association (TMA)
  2. Inclusion Body Myositis
  3. myositis
  4. Health (Industry)
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John, Thank you for your story. Our lives parallel a little bit. I, too, have been recently diagnosed with sIBM. Right now, my main symptoms are associated with my hands, weakness of grip and a pain while writing. Opening bottles and cans is starting to be problematic. I have a soreness in my legs but can still walk two miles per day. I realize that it will only get worse so i am trying to do as much as I can while I am able. I am trying to focus on what I can do rather than what I can't.

I was born and raised in Dayton, Ohio but I lived for several years (1970-1975) in Pittsburgh. I am a retired engineer (nuclear power operations). I am also an avid amateur astronomer. I have lived in Seneca, SC for the last forty years. We have some relatively close dark sky sites available to us here and I am determined to take as much advantage of them now as I can before I can no longer handle and manipulate my scope (10" dob).

Thanks again for posting your story and good luck to you.

Tom-owix
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Thank you so much for sharing your story with us John. So many are misdiagnosed with polymyositis when they in fact have sIBM. What some may not understand is that treatments for polymyositis may make IBM worse. Again, thank you so much for your story. Very brave and will help others!

myositissupport
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I was diagnosed with SIBM 3 years ago. Thanks for posting this.

johnpearson
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thanks a lot for sharing! .. sibm differed from polymoysitis in that distal muscles facial affected, it's asymetrical too

hellomeme
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Hello from Pittsburgh!
I am studying for my Boards and wanted to know if you have any facial weakness-does not appear so from video.
Hope you are doing well, though. Were your CPK levels ever elevated and did they try steroids when they thought you had polymyositis.
Thanks for posting.

psychguru