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Am living with myositis Ossificans

Hearts and prayers! Great to see your progress!

Good news!

LOL at the minecraft hunger.............................. but thanks for the update that you're doing better.

Glad you're doing better. When I was growing up, my parents would tell me to stop gaming cause I was wasting time. Now my kids are growing up and we're playing games to bond. Minecraft was fun when they're young. These days were playing Overcooked 2 and other face-paced co-op games.

I think you're dropping goldfish because you're distracted by your tian mi mi. I find it interesting that your food of choice throughout this episode is fish. I would have done the same as your son in that situation.

Thank you for sharing your journey to diagnosis, Kevin! Be well 🥰

Great update! I'm so glad to see things are improving!

Hi, your channel just popped up on my home page, I guess that’s what it’s called. I was originally diagnosed, back in 2002, with Polymyositis by a local dr but Mayo said IBM. Then NIH said PM and Dr Ottis at University of Pittsburgh said IBM and a skin biopsy showed DM. Now it’s thought I have all 3. I’ve done 8 study meds along with the usual IVIG, methotrexate and other useless meds. Prednisone for over 20 years now. I’m 57 now and in a wheelchair. I fell and shattered my femur 3 years ago and haven’t walked since. I can’t roll a wheelchair but I have a Jazzy air. I haven’t given up standing yet. I can stand in the pool. My hamstrings are strong enough but quads and hip flexors are a joke. Trying to follow a study done a few years ago that says I need to eat 1gm of protein per 1 kilo of body weight, vitamin D and testosterone where it should be and creatine 10gm per day. 100 gm of Protein is tough. Plus some exercise, of course. Supposedly this averaged a 38% increase in muscle strength 🤷🏼‍♂️. It’s worth a shot. I’ll keep watching, take care.

Kevin you're looking good man!

Thx for the update.

Just dropping a comment to say Hi and hope you had a chance to celebrate mother's day.

Been watching your videos, as I was jus given the news I have this thing. Thank you for all of them… they’re insightful and educational but also funny and refreshing. Surprised at the very very little content is out there about this, but I’m glad I found your channel 😊

May God heal you and grant you health. If you never mind tell me how old was you when you got myositis

Thank you for sharing. I wish you love and strength in your journey

Maybe you should consider some physio to get moving again, since you have this improvement. It helped me to accelerate my recovery. Some great resources online too!

Glad to see you doing well.

Please forgive me a few answered this in your video. Have you considered facial recognition? Also being able to search by something in the photo

Hello. First, i wish you all the best. I also got diagnosed with Mayopathy, but waiting to tind out which mayopathy is. I want to ask you a few questions, is there any way i can email you?

What insurance do you use? I’m having a hard time v choosing one

Great to hear!

Glad to see you doing better again. Do you ever find you'd like to search for images by concepts/words? Seems like an AI classification approach might be useful.

Good morning, Seems like the right combination of treatments is accurate per your update. You are looking much better than the last video, and im very glad to see that! You are an inspiration for those who are dealing with myopathy illnesses such as myself. I'm praying for your healing, brother. Appreciate you for sharing your videos.

come back with an update.

a pokemon go

omg! that squirel!

hey Kevin. my blood test for ck is 1,166 and im starting to feel like i have myositis. thank you for telling your story.

How are you doing? We haven’t seen an update recently. Did RTX work?

Thank you! Did ivig helped in your case?

Hey what myositis do you have?

I was diagnosed with PM a little over a year ago and some of the problems I have with cars is getting in/out and most of the times don't have the strength to push down on my seat belt to click it closed. Not sure if its the angle or because the part thats attached to the seat sinks in and moves. Its very frustrating.

Sending prayers 🙏🙏🙏 you are a fighter. I admire you for being able to share your experiences with us despite the challenges you are facing. Lets hang on. Everyday is a day to getting better. My thoughts and prayers are with you ❤

I want to ask something

Can I say, fantastic piano playing first. I play piano myself and I have lost muscle ability to elongate my right arm. I’ve noticed my body will shift to the side the compensate the lack of movement from my shoulder. I struggle daily with loss of strength and drop a lot of things. And struggle to put my arms above a certain height. Right arm is affected more than the other shoulder. As Im right dominate hand. I have other members of my family that have PM and I get to be assessed soon for more thorough testing.

My husband was diagnosed with Inclusion Body Myositis 3 weeks ago. We have been on the Carnivore diet for over a hundred days now, heavy on the keto side of Carnivore, and he's doing great. The doctors that talk about Carnivore encourage ppl to continue for 3 months before you give up. Broth really helps, chicken and beef broth. Do you think you'd give it a try again?

If Ritmax doesn't work in 6 to 9 months, you should try clinical trials.

Hello sir, I hope you are doing well. My question is did you have any type of muscle skeletal pain? like real pain all over?

I’m newly diagnosed with IBM and I’ve learned so much from your videos. Thanks so much for taking the time and for keeping us informed. Please take good care - I look forward to seeing your progress in the next one 😊

Sending prayers and healing in Jesus name

Sending best wishes buddy! Hope we start seeing some of those improvements!

Hi - do you have any recent updates? I have been going through very similar than you. Keen to see how you are getting on …

Hi, wishing you well on your rode to recovery. Did/do you experience any muscle twitching?

Daikin ID🤣🤣🤣

Ahh... daikon... Daikon Dave. Daikon standards. We had a whole team dedicated to daikon. Hope Wednesday works out. All the best.

So you are a daikon specialist....

Thank you for the update Kevin. Praying.

Hang in there. I went through what you are going through. A combination of steroids, chemo (cyclophosphamide), IVIG and Rituximab did the trick.. thoughts and prayers.

Praying for you Kevin. Thanks for the update.

Praying for you.