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Polymyositis: The evolution of this diagnosis in light of recent research
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- Опубліковано 14 сер 2024
- Dr. Lisa Christopher-Stine joined MSU live online for Myositis Awareness Month, May 2018. Discussion includes polymyositis, necrotizing autoimmune myopathy (immune-mediated necrotizing myopathy), inclusion body myositis, Bohen and Peter Classification and the new myositis classification, autoantibodies, overlap syndrome, and a great overview of the idiopathic inflammatory myopathies.
I am NOT a doctor so I will simply say I appreciate you sharing information so interesting..informative and education.
We are so glad you found the helpful. We are committed to providing myositis patients, like ourselves here at MSU, with up to date education and support.
I'm struggling 14 months out from antibody negative DM diagnosis on methotrexate and IVIG. My struggle is severe, debilitating tenosynovitis. I'm considering going back on prednisone. I always have had forearm and hand weakness and edema and stiffness. Scares me that maybe my diagnosis is wrong, but my muscle biopsy shows PM/DM characteristics, no inclusion bodies. Now I have ankle swelling, tendinitis, calf weakness. This lecturer keeps saying "proximal" muscle weakness but I've had both proximal and distal. Also, my right side has led the charge, with my left muscles lagging behind. I was in a massive ski accident just before I got this disease and the snow boarder slammed into my right side of my body causing severe injuries, so I wonder if that's why my right side leads the symptoms.
Excellent, so appreciated!
I do wish, that danish doctors were aware of this video!
I’ve had PM for seven years now, anti jo-1 positive. I also have lupus and SS. I also have ILD and am waiting to have a tests for heart involvement, pulmonary hypertension . I found this very insightful thank you. I’m from England and have to say I’ve had to do a lot investigation into this disease myself.
Addendum: Please assess nasal spray ketamine for people like us... I read about it. It sounds better than opioids. We need coping tools. Please advise.
Mechanic's hand: The hands I get, working in moderately cool shop conditions I will get Raynaud's spasms so bad that I cannot hold tools and my fingers scream with pain if I don't warm them with a heat source. The name fits. However, my feet won't spasm if I'm walking around, they go into the vascular spasms when driving - not when hiking - my hands will Raynaud's flare when hiking, but my feet will be fine. Standing at a bus stop, in the winter, bring on a terrible pain I imagine to feel like frostbite would but there's no evidence of frostbite just PAIN that goes away after warm-up... Hiking foot would not be a perfect term. I think of my extremities as having a hair-trigger for hypothermia/hyperthermia. I overheat in the sun/heat and get a fever from the sun. I'm an obvious vampire who needs to hang upside down to be comfortable or go live in the jungle but stay out of the light. I sometimes think I should learn to walk on my hands. I am undiagnosed with severe muscle pain in Canada. My doctor refused to order EMG or biopsy or sonogram. Because I'm still able to walk and lift my arms, but that's going to fail I feel it getting difficult to get out of bed and turn over or lift my arms over my head. My Grandmother died paralyzed and her heart failed, they said unknown peripheral neuropathy. My family has cerebellar neuropathy in autopsies. My mother has no feeling in her legs. I have severe pain in my muscles around my arms and legs at my spine, but my hands seem fine. Big pain in my neck. My spine is very painful. Yet my bloodwork is good, no enzymes, so no tests justified. So much pain... losing function. Grateful that is slow to progress. I may have another decade or two before my heart stops like my grandmother, or my legs and arms stop working :) Oh well. Can't treat it anyway, might as well eat a peach. Damn my neck flexors are sore 24/7 drives me nuts
Are we hamsters to be tested on i suffer from this took treament for 3 yesrs and made my muscles worse
haha, we are totally hamsters, sorry sister. Laughing at the truth not at being a damn hamster. "Despite all the pain, I'm still just a rat in a cage" Smashing Pumpkins. Nobody understands. Jeez, this hurts. My mind can't deal. God bless you, if there is a God then we will have a very pleasurable afterlife from all this suffering. My muscles feel like they are dying. I supplement with potassium and magnesium, don't take calcium, helps a little, folic acid, stop eating carbs, no sugar, and then when nothing helps hit the alcohol and drink myself to sleep, which undoes all my supplementation and makes it worse, but I at lease escape for a few hours... Ketamine can help if you get a nose spray, but it won't fix anything. I fantasize about the relief death would bring me, but I'm too stubborn to hang myself so I just keep living... I'm really sorry dear. PS I wouldn't put any faith in what they give you to heal your condition. They don't have any other way to help than to just guess and throw stuff at you, to see if it works, then say, oh crap, sorry, it made things worse. They have good intentions but can't really know what they are doing because the data is not yet there... This is a very good presentation the presenter is honest that some people respond to prednisone but lots don't respond well and it just gets worse, sometimes the pill they give you will make it worse. Sometimes it will just get worse no matter what you do. It's heritable; I am Forsyth clan, and Summach clan, Summach clan has shit DNA. You might find your great aunts and uncles, grandparents and grand uncles and aunts, are dying young or paralyzed. Sucks to be you/me
To bad medical science is not the PERFECT science we all deserve. Just as when I buy a ticket on southwest Airline I expect to get half around the world in 2 hours or less
I was diagnosed with myosities..cpk 1000 and sgpt 144..I can walk slowly but cant stand and climb stairs without support..given steroids and folitrax..am in medication since 1month..how long it takes to get cure..pls suggest me
My mom has been diagnosed with polymyositis for 15 years... she’s been constantly in and out of various doctors who just put her on cortisone. She hasn’t improved any and recently she has been coughing a lot, having some lung complications ..Her CPK spikes up when they lower her dosage of cortisone . Are there any natural alternatives or medicine with less side effects ? Any help would highly be appreciated!
So very sorry to hear of your mother's condition. We are not aware of any natural therapies that would help. We invite you to learn more about treatment options at understandingmyositis.org/myositis-treatments/ . There are many options that can be tried to help reduce the prednisone.
Please go to Rheumatologist and discuss about Rituximab injection 1mg for Polymyositis Patient because the Rituximab injection is more expensive but recover your muscles if you use with mycophenol table after injection very better for patient
Hi i was diagnosed with pm also ...a natural way to control it is simple ...discipline..no sugar or gluten...use lots of ginger and turmeric and spinach in no time ur gonna see a tremendous drop in ur cpk
@@romainemcarthur3370 what time we use them of a day plz complete details share with us
@@romainemcarthur3370 how much ginger and turmeric per day
Would I have Myositis when my muscles tighten up and last for 20 minutes or less and I have to use ice to relieve the tightness or cramping? I have it more on my legs, front and back, thighs and calfs
Thanks
I'm anti-SRP PM patient..having the symptomss in Nov last year, but first dx in Feb 2018 (couldn't. walk anymore during this time). Started to walk again last month (April) after taking cyclophasphamide...feeling grateful for being able to walk and function normally again, but at the same time I'm afraid of the side effects of that cyclo.
SRP is a really difficult form and we are sorry to hear you have this. Happy to hear that you are doing somewhat better. The risk vs benefit of the current medication options is always a tough decision.
I'm 33 yrs old. I'm also Srp myositis and my previous doctor opted out on treatment me with Rituxan. They waited for me to get weak, became unable to stand, walk on my own until they decided to give me the infusion. I had to go on disability while my job is put on hold. I'm still not able to stand on my own 8 months later now. I'm on IVIG monthly and have no idea wether I'll be able to walk again. I find it hard to trust doctor who treats you as a case study instead of treating you as an actual human being. I will be starting Rituxan next month hoping for a change, any advice please?
It messed up my daughter's heart
@@1ofakind_rare324 Medication
Hi sherleyl are you any better now hope you better now
Is it possible for this to occur in combination with FSHD, or will it always be either the one or other?
My mother is pm with srp positive she was suffered from march now october but she cannot walk by itself what we do 2nd dose of retuximab was given to her by november 1st was given on may it is right?? Please reply
We are sorry to hear of your mother. SRP is a very tough one to treat. Rituximab is usually the treatment of choice and it may take months for it to work. I would be sure to address your concerns to your mother's healthcare team.
Myositis Support and Understanding How can i contact with your team i need help
Our website is Understandingmyositis.org and our email is info@understandingmyositis.org Look forward to helping.
They just did the first diagnosis for my mom and said Als and to get a 2nd opinion but she has all of the polymyositis symptoms without treatment for 6+ yrs i mean everything she went through. They refuse to do a muscle biopsy and now in her 60s she is obviously chronic i wish someone could help us . she has strong neck and head and can walk but falls.
Mimi, we are so sorry your mom is not getting the care she deserves. I would suggest seeing a specialty center for myositis. Here is some information for you: understandingmyositis.org/tips-to-find-doctors/
Oh thank you so much for sharing and teaching us people that have this desease PM. I was diagnosed with anti Jo-1 3 years ago. I have the problem with breathing as well. I’m currently on and off prednisone. But I want to be off completely. But I fear not being able to walk at all. It dose get very hard to stand when I’m not taking the prednisone. So is there any other medication or natural remedy we can take to help us live a mobile life and be able to walk without so much pain?
Thank you again for teaching us and for being so kind and sweet in this video. 😁
ask for ketamine nose spray. I can't get it yet in Canada but it is coming, used for pain and or depression, very fast-acting and low side effects. Opioids are horrible, and will just lower your pain tolerance, which is awful, I tried that, been there done that, not good. Research is good on Ketamine but I don't know when it will be readily available. We need to ask and advocate for things that help us deal. I've been left without any way to deal and I have started to drink regularly which is not good either, but hell. It's hell. Who wants to live like this? But I'm just too stubborn to die. Good luck. acupuncture helps a bit, but the disease will still progress
Please I need help I am in pain my face is red with a pause it is in flames my hands hurt can I pick up my shoulders my whole body hurts it feels like I’m going to die please help me
Please contact your doctor. We are not able to provide medical advice. We understand your symptoms and pain and hope you find the help you need and deserve.
After accident In my thigh polymyositis