I have been dealing with polymyositis since May 2017. It has been a rough ride. I haven’t met anyone who has the same thing, and sometimes it’s hard to have no one to relate to. I appreciate you sharing! Sending you lots of love.
Aww Thank you ☺️ It’s very hard in the beginning. Physically and emotionally frustrating. I’m glad you found my channel. I hope you watch the other videos, and I have more to come in May about Polymyositis. But if you ever need to reach out to me don’t hesitate. I can relate! I will listen! I have more detail information on my Facebook page Polymyositis: Bringing Awareness. Check it out.
Beautiful Brave Angel: I can't begin to thank you enough for this video, all of your suggestions, and your story. I'm 59 with multiple ER visits over the years and I was treated like I was crazy. I have connective tissue disease and C.R.E.S.T.(scleroderma, autoimmune liver disease), Sogrens, and Raynauds. Mild scarring on lungs so far. Went to a new internist I met in hospital during a May 2020 heart attack. He is now my advocate. I couldn't start my cardio rehab because I was so hypoxemic I couldn't talk without coughing. I remained hypoxemic while sitting in his waiting room for the next 20 minutes. Oximetry 78% then 86%. He called my pulmonologist and asked him what the hell he was doing for me, meanwhile giving me a 50 mg steroid burst and all symptoms subsided. My guess is the Medrol was masking the myositis to a degree (small dose, still had breathing problems). Pulmonologist ordered another CT scan. I was told (again) my scarring is too mild to cause my hypoxemia. Put me on 2 ltr oxygen, threw up his hands and sent me to University of Michigan. U of M has a clinic devoted to ILD. Appt was 3 days ago. First guess out of the box was Myositis. My EMG is in October. I'm 59 and scared out of my mind. You brought me to tears with your story, and also because I finally feel that someone understands, after 20 years. I wish you every blessing from God that your heart can hold.
Linn Wow... hearing your story breaks my heart. Yet I’m grateful that you are alive and getting treatment. Please know that you are not alone! There is a community of women of color that I work with at The Myositis Association and Myositis Support and Understanding. Please find me on Facebook under Holly Jones, Myositis Women of Color, Polymyositis: Bringing Awareness. We have some webinars that’s are coming up in September and October. So please subscribe to my channel to get updates and follow the Facebook pages to get updates on there. Please keep me updated!!!
Chelly's Closet You can always reach out to me! I’m on Facebook also under Polymyosits: Bringing Awareness. Or on Facebook messenger under Holly Jones. You are not alone!
I've been dealing with PM since 2013 and I've been flairing like crazy and I was put back on prednisone 60mg and imuran 300mg 😢I went on a pulmonary test yesterday and I have a cast can for my chest coming up on Thursday may 9th... I want to have another baby but it's been very hard for me,... When I first got diagnosed OMG I was on so many medications like prednisone, azathioprine (imuran) methotraxate and I did also had the infusion of the prednisone through my vein 🤭. My pulmonary test was awful and like you said moving around my oxygen went down to 85% and heart rate 105 like Wooow I'm too tired
Omg... I have been there. I understand! What liter of oxygen flow are you on? Sounds like you might need to increase. Or at least increase when walking. Please keep me updated on your journey. I’m getting my videos in order to start presenting this month. Make you sure you subscribe and a get notified! Also I will be going live on Facebook every Monday night for a Q&A.
I can't thank you enough for this video. It is really hard to find information out there that explains the symptoms in more details. You explained them so well, especially the heaviness like getting out of a pool and the muscles feeling tight like after a work out. It is hard to walk up stairs, and I cannot jump. I thought it was just my Grave's disease. Thank you again. God Bless you :)
Kimberly Hannah Aww 🥰 Thank you for the kind words. I’m glad my video helped explain how Polymyositis can make you feel on more of a personal point of view verses a medical book. It’s the little things in life they were taken for granted like walking upstairs and jumping that makes you appreciate the bigger picture of life more. Please keep me updated on your journey!!!
The life of RJ!!! Johnson Yes it is scary. Even for me now after having it for almost 16yrs. But it will get better, if you keep a positive attitude and have the right team of doctors. I pray that you have a great support group as well but I understand that for some that is not always the case. But if you believe in something or someone like how I believe in God, you can conquer anything! Every year The Myositis Association has a conference. There is so much information that you can receive there. It’s in September. Go to there website for all the information. Please subscribe and keep me posted on your journey.
