Polymyositis & Dermatomyositis Support Group
Polymyositis (PM) is a type of chronic inflammation of the muscles (inflammatory myopathy) related to dermatomyositis and inclusion body myositis. The inflammation is predominantly of the endomysium in polymyositis, whereas dermatomyositis is characterized by primarily perimysial inflammation.
Hi everyone: glad I found this discussion. Been reading topics since out of hospital 3 weeks ago. I'm waiting 3 weeks for muscle biopsy, but tentatively DX as polymyositis. Out of the 11 docs who worked on me in hospital, and 3 neurologists, not one had diagnosed polymyositis before. Although I noticed symptoms in early June, I waited 1week and began seeing my GP to complain about weakness in legs, shoulders, hips. After 5 weeks, she gave up, and I checked myself into ER to get help. An on call Doc did MRI, CT scan, ultrasound, chest exist, heart scan, and called in neuros who decided possible poly. So I was diagnosed within 8 weeks of symptoms. Is that fairly quick? Seems like I have been hit hard by this. 4 days in hospital, got CPK down from 10,000 to 5,000. Taking 60mg Pres. And down to 4300 CPK. Still can't walk, mostly in bed. Doc knocked me up to 80mg. When will this kick in? It's been 3 1/2 weeks on this drug! This is hard!!!
So with the fast onset, your muscles took a huge hit. Now the long process of regaining strength. The Prednisone just tries to stop the damage, but the damage that is done will take time, and lots of it to repair in my experience. I was able to get Physical therapy pretty quickly in a hot pool to keep my range of motion up. You need PT with neuro experience and it is most likely at the hospital outpatient therapy, not the PT down the street. You need folks that treat MS and neuro injury, so that they will go slowly with you and not make things worse. It may not be time to start that now, but definitely range of motion is key now to prevent conjectures and damage from just laying in bed.
Where are you located?? someone may have a good team in place near you they can recommend.
Keep asking questions, we do like to help.
Shawna