Відео

where is part 1

my sister has IBM -Inclusion Myosititis, she had at least 4 covid vaccines! Now she walks with a cane & has been diagnosed with IBM

Amazing advise, thank you very much.

Thank you!!

Thank you for sharing ❤❤❤❤❤❤❤

This has been super helpful! Great tips around chronic fatigue and how to manage. I'm so grateful for this presentation.Thank you!

Hello! I was diagnosed with polymyositis last year and it has been a tough battle since then. This channel is helping me a lot with its valuable information. Thank you for sharing everything with us!

Wow! This was so helpful and affirming! Thank you so much for your time!

Dr Rohit Agarwal's email id may be provided.

I learned a lot. Thank you

Thank you for this video. I recently had a severe flare of PM. My CK went to 3300, difficulty of walking and I fell once while standing up unsupported. I had to take IVIG, and later take immunosupressant and methylprednisolone. Now my CK is around 300 and I don't have fever anymore. I have started to feel that some muscle function slowly coming back. I want to start physiotherapy next week. This video helps me in understanding the benefits of exercise and the progression that we can work for.

Is there an updated webinar?

thank you not only for sharing your story but for finding a way to continue to impact so many of our MSU family with your compassion, commitment, spirit, kindness and care... <3

Wonderful info !

Diet makes a huge difference and lifestyle ! Diet has been studied a lot especially in Functional Medicine that studies the body as a whole system . They get to the root cause of the disease ! And there is evidence of people over coming there autoimmune disease with natural treatments. Other doctors need to be more open to this!

48:20 similar experience ! but in 1992 i was in a research study at NIH , it was for IVIG treatments , and it saved my life. Mine affected my eating , swallowing , speaking also

I’m looking for a 1 to 25 tincture for situational anxiety in NY. Any idea where I might find this?

I was diagnose with dermatomyositis yesterday, however, I’ve never had the painful rash. Wondering if this could me a missed diagnosis?

Great common sense ideas for fall prevention. Thank you!

I need a grocery carry on shopping cart 🛒 and holding support fer me & power wheelchair ♿️.

Excellent ! I will watch this again and again.❤

Im so happy new medicine is being made, my daughter La Dawna Shante' Duncan passed from Dermatomyositis on December 25th 2013 , she was 22 years old and was diagnosed in 2005 when she was 15 , my heart goes out to all who suffer with this horrible illness 💜🫂

Good discussion

Good content

Deepest gratitude for this presentation. Updated information in regards to this rare autoimmune disease is empowering and helping build trust in conventional medicine. I am 3 months living with DM and I am experiencing muscle pain, muscle weakness, fatigue, brain fog, dysphagia, clinical rashes, and currently systemic itchiness. Currently only on prednisone treatment for one week now and it has helped relived swelling and some muscle pain. Looking forward to remission and god bless to all.

Great presentation!

Excellent, so appreciated!

Thank you for taking the time to make such a thorough video. I'm 56 and was diagnosed 16 years ago with "undifferentiated connective tissue disease". However, new symptoms (and a creatine kinase of over 1,300) has led to a new diagnosis of "inflammatory myositis". I'm tapering off a 1 month course of steroids, in addition to taking azathioprine. Thankfully my labs at my 2 week check showed my CK levels had dropped to a normal 64! I'm so thankful to learn that I can (and must) continue with my daily exercise at the gym. I was unfamiliar with the term "Zone 2 exercise" but it appears that that is what I am currently doing. I don't feel pain from it, just extreme exhaustion and arms & legs that feel floppy. Now that I know that it is okay to feel this way and I'm not damaging myself further, I will continue like exercise is one of my daily prescriptions!!!!

Great video, this is very informative.

Video on accessories? I'm struggling to find the right kind of armrests and cushion

How long did it take you to be able to stand on your own? And what did you have to to do in order to be able to?

How can I get a tablet holder for my chair

Very informative for a complex disease.

I just found your website and you are the first person who have made exercise an giving. I have been so skeptical about exercising. How should one proceed when starting exercise after being diagnosed? Before my diagnosis I went to the gym, I walked on the track, I did water exercise, I walked at least 1mile 3 times a week through my neighborhood. I'm eager to follow your advice. Thank you.

I have DM and no muscle weakness, but I have pain in all my joints from time to time plus Gottron's papules

I feel so sorry for you and I hope you are better today, but doctors needs to be aware that dermatomyositis doesn't just attack the muscles, I have DM and my muscles isn't affected at I all, and i've had it for 12 years. My joints hurts and I have gottron's pupels, plus rednes on my right eye. I just got the diagnosis (FINALLY) after a biposi of the lumps on my fingers that are Gottron's papules, but i'm now waiting for treatment. I am though pretty sure I have mda5 since I have all the symptoms. But for 12 years, doctors and specialsists all over asked me if I had muscle weakness, and since I said "No", they then checked off Dermatomyositis on the "list".. I will gladly let them do all the reasearch they can get from me to help others.

Can both be used to threat autoimmune diseases or only IVIG ?

Thank you for the video.

I would love to see dr Worth. I can tell she knows this disease very well. I’m having some problems with Imuran lowering my wbc and if I lower my dose I flare. I also take IVIG too. I’m I. A bad flair now and my dr hasn’t offered anything to do about it. My face burns and Itches. Hurts like nettles Poking and irritating. It even hurts to put on any lotion.Even ones for this and ones without scents.

I get bad peri orbital edema by itself and with Erythema. I can get them either by themselves or together. There is not a lot of information out about the edema itself. So a lot of drs do not recognize it as a symptom of DM without the erythema. So I’d love to get more information out and hopefully get more drs and others to recognize it.

Did I miss it or did you not mention Heliotrope rash?

Thank you!!

I relate to all of these stories. My Dermatomyositis changed my life, not just physically and emotionally but spiritually as well. It has definitely strengthened my self awareness and shifted my priorities. Thank you ladies for sharing your stories and inspiring this community! ☺️

How do I become a ambassador. Also when are you going to be making wheels for snow for us up in Canada

Will it help for vitiligo? And if so what is the dose

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

Can you please share some insights on the challenges faced for the recruitment in Dermatomyositis trials; Anything specific Priovant Therapeutics faced during recruitment and what was done to overcome the same

OK so what can be done for the itching ? Shit's eating me alive.

I do wish, that danish doctors were aware of this video!

Just tested positive for this test which seems to confirm IBM, although I also have the Sjogren's antibody. Lab was Quest Diagnostics Nichols Institute in San Juan Capistrano, California. Previous diagnoses have included "Inflammatory muscle disease." "Sjogren's syndrome with myopathy." "Polymyositis." Disappointing response to several immunoglobulin infusions. Better response to IV rituximab.