Who Gets Myositis: Myositis 101 for Patients 2nd video

[@kevinoconnell5170]

So thankful for you spreading the word of this horrible illness. Diag 36, M, saw you in Pittsburgh Hospital, now 44 and on IVIG.

[@Myositis101]

Hi Kevin, hope you are doing better on now. Good to hear from you.

[@kevinoconnell5170]

@@Myositis101 The Prograf was the last hospitalization. Allergic reaction caused Hemolytic Anemea, kidney damage, and onset diabetes. On IVIG, my CK has been mostly normal, hemoglobin is 14.5, and I'm in diabetic remission. Still about 80% where I used to be, but off prednisone and losing weight as well. Cheers!

[@Myositis101]

@@kevinoconnell5170 Excellent. Keep going. Exercise to get rest 20% back.

[@gogolekolon5663]

​@kevinoconnell5170 how you doing now

[@joancurry8870]

Hello!! I was diagnosed in 1997 with Polymyositis.i have exhausted every medication for this.ivig was successful after many infusions then I had a stroke during an infusion.they odviously stopped it was on hospice for 18 months from 2010-2011,since then only on plaquenil and pain management.i am grateful for my good days.weakness and leg swelling,dysphasia are my most prominent part of this frustrating disease!! Thank You for taking the time to make these videos.

[@Myositis101]

Sorry to hear your trouble with this disease. We are working hard to find new treatments. If IVIG was successful and gave you a stroke, you can try Sub Cutaneous IG (SQIG) with equal effect as IVIG without much risk of stroke etc seen with IVIG.

[@annparas100]

Omg that’s scary I started ivig too and have IBM 🥺

[@AdityaGupta-xq3kr]

How are you now ?

[@malinim1965]

8

[@gogolekolon5663]

​@annparas100 how are you doing

[@heartbeatviews]

Thank you for explaining. My aldolase was high and my rheumatologist sent me for myositis panel. I am 39 and I am still in recovery from cancer. I am cancer free but reconstruction and medication I take for the next 10 years no chemo. We found narrowing of the right knee and my nerve conduction test said I have some nerve damage in my right leg. I had no idea what myositis was. Thank you this helps some.

[@ppiya958]

Heyy ..how are you now?

[@maragrace820]

In Italy doctors use shock therapy to get rid of the calcification. In the U.S. they use that therapy only for kidney stones. So we are going back to Italy where osteopath do a great job with manipulating muscles and bones

[@annparas100]

Ok interesting

[@Lilyyyyyyyyyyy03]

Thank you for these videos. 27-year-old female from Cape Town, South Africa diagnosed in 2018. I believe I'm my rheumatologist's second Dermatomyositis patient so any new info is helpful.

[@Myositis101]

Thanks for your note. I hope you are going better. Good luck.

[@didem8251]

Super helpful videos for patients and health care providers!

[@టీఎంసీ]

Sir, there is any possibility to controls or treat IBM

[@abhimanyuyadav6599]

I and my brother both are suffering from polymyositis.ihave a daughter 1 year old from ivf donor egg. Is there any chance of her suffering from same. I have been suffering from this disease since 20 years

[@jesusgod9150]

Not so rare anymore. Big shout out to all the unvaxed. Stand strong and hold the line! No means no!

[@annparas100]

Hi I have IBM a female of 61 diagnosed this year and have started ivig what else is recommended please ?

[@008boot6]

I think I am suffering from this. In my entire childhood I never worked out. Now in my adulthood I don't have energy to even study.

[@AdityaGupta-xq3kr]

How are you now

[@fionaferris6492]

Thank you.

[@tammyporter4848]

Could this be a vaccine injury.....? Like from the vaccine schedule prescribed all of our lives?

[@kristyolivas418]

I wish I could see you as a Dr..I'm in Texas..I've had a really bad past year..I think mine was induced by contrast dye.. What's your take on contrast Dr.?

[@annparas100]

Anyone found anything that helps IBM other than ivig please?

[@UttrakhandipahadiRavi]

Sir mujhe Polymyosities h utta nhi jata kya yeah dawai se shi ho sakta h

[@laughinghahaheehuhu9547]

Hi