Polymyositis with visible swelling

[Angebuck]

My friend is still struggling to get a diagnosis. Can i ask if anyone have Polymyositis with visible swelling. She has had a ton on MRIs( showing Inflamation in muscles and around them), blood tests (all negative included auto immune panles), negative EMG.

Been on high level of Steroids for 9 months. diagnosis not held due to the swelling. So no treatment other than Steroids, (mycophenolate tried but did not work).

Thought i would reach out to see if anyone here had any advice or similar situation.

Thank you in Advance for your Kindness

[SoonToBe]

Prednisone can cause swelling (water retention). So it could be that. The fact the EMG was negative suggest it is not muscle or nerve related

[SoonToBe in reply to SoonToBe]

inflammation must be from something else

[BeachBuddy]

Hello, I was diagnosed with polymyositis in November 2021. I experienced lots of swelling all over, in particular ankles, feet, lower legs and arms. I struggled to wear shoes and trousers were tight to pull up over my legs. Strange when in fact I could not eat and had lost over a stone in weight. I hope your friend receives the help she deserves.