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jlw (@jlw)

Non Specific Myopathy

Autoimmune Diseases | Last Active: Feb 13, 2020 | Replies (8)

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@jlw. I know how hard it is and patience goes right out the window! Finding the right doctor who is willing to investigate and just waiting is so difficult. I’m also a nurse and know that waiting is the hardest thing ever. I an only suggest that you continue advocating for yourself. Have any doctors suggested what can be done to help symptom-wise? I was started on intravenous steroids for 5 days, then switched to oral. It’s referred to as ‘pulse’ steroids. I’m going to see what other members have talked about myositis or non specific myositis. Please stay in touch, we’re trying to help, but I know that it’s hard for you

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Replies to "@jlw. I know how hard it is and patience goes right out the window! Finding the..."

Thank you. I get so frustrated. I literally was normal working person with hardly any issues. Then all of a sudden it was taken from me and we still don’t know exactly why. We started me back on 60mg of Prednisone po and I go back to my doctor in a month. I know they help. I can walk without a walker. Still limited but a little more mobile and less pain. Off and on I have been on oral pain medicine, but I worry too much about addiction and they, truthfully, do not help the pain that much. Lyrica helped some, but leg swelling was an issue. I keep pushing and am lucky I do have a caring PMD. I am trying so hard to not stay frustrated, but I went to Mayo because they are experts. Expensive and painful re-testing and we are right where I started. 🙁