Myositis Research Webinar IBM Dr. Mazen Dimachkie 10.12.23
ฝัง
- เผยแพร่เมื่อ 11 ต.ค. 2023
- Dr. Mazen Dimachkie, Professor of Neurology at University of Kansas Medical Center, discusses his team's research and answers questions about IBM (Inclusion Body Myositis). October 12, 2023
- บันเทิง
I started getting this disease I B M about 6 to 7 years ago. It took around 5 and half years before the doctors ( my neurologist) figured out what I had exactly. I do not have pain or swelling, but much weakness. I have dysphagia so now I have a feeding tube. I would like to know I can be part of these studies, ???😊😊
This is a recording of a webinar held in Oct 2023. To find out about clinical trials’ inclusion & exclusion criteria, go to ClinicalTrials dot gov.🌺
A very informative and easily understood webinar, Thank you for your expertise!
Currently in year 8 of this darn disease. Walking with a cane. Losing use of my hands. Praying for a treatment. Please
Thank you guys for all your information
My husband has necrotizing autoimmune myopathy with srp he also has ILD. He is 43 now diagnosed in 2019.. his ck levels go between 500 to 1000. He has had 4 retuximab treatments and does IVIG 4 days every 3 weeks. My question is why does he stay so tired? And the Dr said he should not have pain. But his hips thighs and knees stay tired.and weak
I’ve had Inclusion Body Myositis for over 20 years. There was a study conducted in 2021-2022 which showed that many Myositis patients report pain. Many docs are still relying on old information that didn’t study pain.
Re fatigue: anecdotally it makes sense that as muscles weaken, all normal tasks in life become more difficult & take more effort. Fatigue follows🌺
Email for alley where do I find
I have IBM, my inflammation levels are down, and I've gained some muscle back. Went to a nutritionist and trainer.
Are there different levels of having this disease?
My daughter died from mis diagnosed and mis prescribed with 60 mg prenesone. She has