Myositis Journey E01

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  • Опубліковано 22 січ 2025

КОМЕНТАРІ • 26

  • @SpookiestBecky
    @SpookiestBecky 5 місяців тому

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

    • @wanderingmusic38
      @wanderingmusic38  5 місяців тому +1

      Thank you! Working hard at getting better am I!

  • @jameslu3530
    @jameslu3530 4 роки тому +1

    Hey Kevin! I didn't know about this rough journey you're on. I'll definitely be keeping you in my prayers, for the wisdom of your doctors and that your health improve! Just remember that whatever you're going through, as you persevere in the Holy Spirit, God will make His glory in your journey! Thank you for sharing such a personal part of your life!

    • @wanderingmusic38
      @wanderingmusic38  4 роки тому

      Thanks James. Really appreciate your encouragement!

  • @testuser55
    @testuser55 4 роки тому

    Kevin. Sorry to hear about you going through this. You have my thoughts and prayers for a speedy recovery. Hopefully your body will treat it like One Punch Man and knock it out with one shot! :) Have not seen you in awhile but I am not far, if you every need anything please don't hesitate to ask. Tony

  • @irisleung939
    @irisleung939 4 роки тому +4

    Hi Kevin, greeting from a body of Christ! Will pray for you and walk with your journey. God be with you!

  • @KarrissaOwens
    @KarrissaOwens Рік тому +1

    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.

  • @sarahsychen
    @sarahsychen 4 роки тому

    Hey Kevin~thank you for making this video. I really appreciate finding out about what you are going through. It sounds like there is a dependable treatment plan in the near future. I am so glad to hear that. I look forward to the subsequent videos of your journey. You will be in my prayer. :)

    • @wanderingmusic38
      @wanderingmusic38  4 роки тому

      Thanks Sarah! I look forward to the next videos too! It's been really a big blessing so far. Which wasn't exactly what I was expecting. Though how would I know what to expect. I've never done anything like this before :)

  • @СтудиядикихКазахскихмангустови

    Hey what myositis do you have?

    • @paintersqueen
      @paintersqueen Рік тому

      Yes, I too would like to knew which myositis you have because my husband has DM.

    • @СтудиядикихКазахскихмангустови
      @СтудиядикихКазахскихмангустови Рік тому

      @@paintersqueen my wife got JDM(child type of myositis) and I am worried about children will they have that disease,because autoimmune can be hereditary especially if both of parents has autoimmune diseases

    • @wanderingmusic38
      @wanderingmusic38  11 місяців тому

      I have tested positive for the SRP antibody, which gave me necrotizing myositis diagnosis

    • @NomadicTraveller305
      @NomadicTraveller305 11 місяців тому

      Hello brother. I'm a 25 year old male with necrotizing myositis. I was diagnosed 7.5 years ago. No treatment is helping me over the years. Is there any new treatments that you've been on?

    • @wanderingmusic38
      @wanderingmusic38  11 місяців тому +1

      @@NomadicTraveller305 Hi there. Wow, 25yrs old, that's rough. What works for me is combination of IVIG and Rituximab (I think. It's early yet, but this combination seems promising for me)

  • @meif3888
    @meif3888 Місяць тому

    Hai.i just subcribe ur channel..please keep update. Tks alot for sharing. Healthy always..

  • @paulojustinianookubo
    @paulojustinianookubo Рік тому +1

    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?

    • @wanderingmusic38
      @wanderingmusic38  Рік тому

      No pain for me due to myositis. Only pain on the few occasions where I fell. (Fall injury pain) And the one instance of severe ankle pain for a weekend that is still a mystery.

  • @ScienceInMedicine
    @ScienceInMedicine Рік тому

    Thank you! Did ivig helped in your case?

    • @wanderingmusic38
      @wanderingmusic38  11 місяців тому

      IVIG alone helped me be mostly stable but i would still get weaker every few months.