How Myositis affects the Heart and Lungs, Dr. Tahseen Mozaffar, 2018 Annual Patient Conference

[@Kitkat2870]

I think, so far, this is the best video I've come across explaining heart, lung involvement in myositis and what other risks may occur like cancer etc..

[@lindseylynch2368]

I agree!

[@elaineslavens8374]

Excellent video very informative p I wish I lived in Southern California so I can become a patient of his

[@ilse-u6x]

Have COPD, Osteonecrosis,High blood pressure ,my body burns like hell

[@rockykoast7065]

I found this super informative. I have a recent tentative IBM diagnosis.

[@kpkbkpkb7768]

I was referred by my local doctor to Dr. Mosaffar but he was too busy to get an appointment with and not taking new patients. I have antibody negative DM with colossally symptomatic tenosynovitis/arthritis of my hands, wrists, elbows, shoulder, ankles, achilles, and knees. This is nuts b/c no one knows what's going on and keep saying that my disabling tendon problems are not a part of DM. I think I must have some antibody that is aimed at tendons AND muscles and skin. I had the classic rash with the weakness at presentation, but also had severe hand and forearm edema at diagnosis too. I wish people knew more about this.

[@dianecrockett3905]

It might be possible that you could have Mixed Connective Tissue related Disorders. Such as Sjogrens Syndrome, or Ehlers-Danlos Syndrome-hypermobile, RA, OA, DDD, or one or two of a bunch of Rare Autoimmune Syndromes.

[@DianaMcMillin]

I have direct hit muscles and my heart went in and out flutter. First found enlargement aorta Unk. Second hit prior had chest pain and ignored card because prior scan no heart disease. I’m with jo1 with CT’s. Alway muscle pain upper part breast muscle and under arms. I went into aflutter after major hit to my muscles. I looked it up and found a flutter from myositis. Would like to hear more on few of us with heart. I got clean bill no heart disease prior. Arteries clean.

[@marykotuba6901]

Could this be why i can never seem to pass a breathing test?

[@laydeeTeaAurora]

I have the Anti-Jo 1 and I have ILD. I am short winded even breathing sometimes lol. I do have a dx of Polymyositis and was dx'd 9 years. I have been on Rituximab for 4 years but started off with IVIG and it didn't work. I am now using 2 pillows and sleep mostly on my side. I also am using a Bi-pap smh. I am the exact case he is talking about.

[@joeax61]

Me too, I have had Rituxan 8 times in eleven years

[@sherleyl27]

Hey dear I've been diagnosed with Polymyositis 3 years ago, I'm on IVIG and it's not working. I would like to ask you about Rituxan. My doctor is talking about my next course of treatment Rituxan and I would like to know about your experience on this drug. I'm currently unable to stand or walk on my own and I'm hopeless

[@joeax61]

@@sherleyl27 Rituxan has always worked for me, after Prednisone. Better than Methotrexate, Cellcept, and Imuran

[@45MommaThe]

I have been diagnosed polymyositis 2 muscle biopsies, EMG's. Decadron, prednisone, IVIgs, Rituxan, Methotrexate. My CK ridiculously high. I am on bi-pap oxygen, they just stopped the methotrexate. Nothing helps side effect are other auto immune. The inflammation nothing helps. My heart is inflamed. It is a painful thing! Lost no direction to go.

[@fambam4266]

I am also suffering with this it's like thier is no help no one to turn to. I started a KZbin channel to bring Awareness to this. Check it out it's called fam bam! We need help

[@madeleine7]

I am in the same condition! Dermatomyositis is very painful and I am bercoming very weak! Abdominal pain is through the roof, and, I fear I have an Ovarian Neoplasm, Ovarian Cancer.

[@mousse425]

Very well described . Thank you

[@DianaMcMillin]

I have direct hit muscle and my heart went in and out flutter. First hit chest pain and ignored card because prior scan no heart disease. I’m jo1 with ctd

[@web9254]

Is the antibody Anti NXP 2 the same as NXP 2? I have a high Anti NXP 2. I have been told I do not have Interstitial lung disease, yet have been on home oxygen for about 2 months. My blood oxygen is usually between 85-92, even though I am on home oxygen. If I don't have ILD, then I wonder why my oxygen levels are so low ?! I was diagnosed with Dermatomyositis 2 months ago.

[@oliaziz]

yes, it's called Anti NXP 2 but often people just say NXP 2. That sucks that you have lung troubles. If it's not ILD, what is it I wonder?

[@45MommaThe]

Dr Aaron Eggebeen is a great rhuemetlogist, Dr Twidell is a awesome neurologist. I am frustrated.

[@jugabratdeka2191]

*I think my heart is also affected by polymyositis , if it is , I am blessed , At least I will die after sometime.*

[@45MommaThe]

It is a very rare disease. God Bless you in healing and your journey. I am at the crossroad. Live my life out or suffer with more full blast of chemotherapy. I pray someone finds a break through.

[@jugabratdeka2191]

@@45MommaThe what worked for you ?

[@45MommaThe]

@@jugabratdeka2191 nothing, I was just told retry smaller dose of one med that I reacted horribly to, all out assault with chemotherapy or just live my life out. So there is nothing left. My Dr said he would check on research at U of M or Cleveland clinic. No study is being done here. Just nothing left. I ask him are we potentially looking at a different disease. He said it is possible even after 2 biopsies. They looked for body myositis and MD. Biopsy come back Polymyositis Myopathy. If my Drs were not watching and following me close they would think I am making things up. Mine acts like a different diagnosis.

[@jugabratdeka2191]

@@45MommaThe what's ur age and gender ? What are your disability ?

[@45MommaThe]

@@jugabratdeka2191 female, 50. Been fighting for years and tired of it. Think I am just going to live my life out. Too much chemo it just gets more, and more.

[@SarahRebold]

Sad, I am disappointed in alot of people

[@johnrevelator6345]

1 hour you are kidding? One slide - 1 minute !!!!!!!!!