Inclusion Body Myositis

robt1
robt1 Community Member Posts: 3 Listener
in Rare, invisible, & undiagnosed conditions
I have the above condition and I would welcome any information I can find. I am told it is rare and there is no treatment. It is a muscle wasting condition which mainly affects arms and legs but it is not terminal.

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  • Ross_Alumni
    Ross_Alumni Scope alumni Posts: 7,611 Championing
    hello @robt1066

    Welcome to the community, it's lovely to see you join.

    Are you in contact with your GP or specialist about hwo you can manage your condition? There aren't many resources out there, but I did find this information page and this UK based organisation Myositis UK.
  • robt1
    robt1 Community Member Posts: 3 Listener
    I do have regular contact with James Cook Hospital. My GP has little knowledge of the condition. I just wondered how others might deal with the condition but it is rare.
  • chiarieds
    chiarieds Community Member Posts: 17,440 Championing
    Hi @robt1 - & welcome to the community. I know the James Cook Hospital well, as I had an excellent rheumatologist there!
    I wonder if physiotherapy has been recommended as this may be helpful. Here's a link from the website that Ross linked to above: https://www.myositis.org.uk/myositis-info/treatments-and-therapies/exercise/

  • robt1
    robt1 Community Member Posts: 3 Listener
    Thanks for your info. I have received excellent treatment with James Cook. I do have some exercises that were recommended by the local physio people. My info from other sources seems to suggest some level of exercise is beneficial. However due to the condition there are some exercises I cannot manage. For example I can fall easily and my legs are no longer strong enough to enable me to get up without assistance. If I fall outside I just hope some bystanders will help me to stand.

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