Myositis - A Diagnostic Journey

Myositis patient Jay Fedosoff talks about his 12 month journey to get a diagnosis of myositis, a rare autoimmune condition that affects muscles.
For more information, visit myositis.ca/

[@chronicallypep5]

I am being tested for this right now. So I’m researching and learning about it. Thank you for this video

[@lmc3702]

How are your doing now?

[@monicawilson896]

I have DM too. I was diagnosed with Lupus at 23 that was really Dermatomyositis. I can relate.

[@indeelift7495]

We're proud to help people who have IBM.

[@zoya4389]

hes the principal of a school now

[@pragmatic_p8]

How's he doing?

[@maritzaswift979]

God bless

[@mishellekickett5208]

My 13 yr old son has been diagnosed with Myositis , we have been 2 yrs into investigate his symptoms , at first he was thought to have mitochondrial but now its myositis . We are still waiting on any medication he may need ?? , he has had no muscle biopsy ?? , no xrays , scans . lots to learn . Really hard to see him in so much pain, he just wants no pain .

[@LoneWolf704]

Hi there , find a good Rheumatologist and immunologist that monitors his CK levels on blood periodically , and demás to get him to see a pain specialist , children deserve to be pain free . Keep pushing for Repeat EMG / muscle conduction studies, get them repeated if necessary and maybe that will give the map for a biopsy , fight for pain control , Baclofen , ect . Best of luck it takes a while . Contact the Myositis Association for a list of providers that are educated on the diseases, many doctors don’t know much about it .

[@rileyrides7813]

Hi, Could I speak to somebody about using this video?

[@HK-kb8tz]

2021 no cure