Myositis Journey E22: Stagnated? Should we change treatments?

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  • Опубликовано: 28 окт 2024

Комментарии • 22

  • @joatkon7744
    @joatkon7744 Год назад

    Praying for you Kevin. Thanks for the update.

  • @stephenlamagna4185
    @stephenlamagna4185 Год назад

    Thank you for the update Kevin. Praying.

  • @justsaying9604
    @justsaying9604 Год назад +1

    Keeping you in my prayers. Have been watching your journey. Just been told I have myositis myself, but I won't be getting the muscle biopsy until April. Symptoms started in October of 2022. Went to the doctor in November. Then, the neurologist in January 2023. An appointment with the rheumatologist isn't until July. It really takes a long time to get in for doctor visits. I'm glad you are sharing so I will know what questions to ask and what to expect when I do finely go to these appointments. I know the progression of this disease is different for everyone, but I hope your treatments start to improve your health before it gets to the point of no return. That will give hope for me and others suffering from this disease. Keep sharing, and I will keep praying. God bless. Stay strong.

    • @wanderingmusic38
      @wanderingmusic38  Год назад

      Indeed, sometimes the waits are the scariest parts! Hopefully you don't have the necrotizing version. It's aggressive and not fun. But I did have that 5 month window in 2021 where I improved a lot, so still hopeful that it's just a switch of treatment that will get me back on my feet! Thank you for your comment and I will pray for you too!

    • @justsaying9604
      @justsaying9604 Год назад

      @@wanderingmusic38 thank you. Prayers for you and your family.

  • @michellechen4025
    @michellechen4025 Год назад +1

    I recently did 4 weeks of home care aide work for my dad and am very familiar now with the toilet transfer and the challenges that come along with it. My thoughts are with you and your family, Kevin! Wishing for the best outcomes for you.

    • @wanderingmusic38
      @wanderingmusic38  Год назад +1

      Thank you! I definitely have found different perspectives for so many things in this phase of my life that I'm in. That might also be something to expound upon in a future episode. So glad you can be there for your dad as well. I'm sure he appreciates it.

  • @foblivio
    @foblivio Год назад

    My thoughts are with you, Kevin.

  • @albertlai536
    @albertlai536 Год назад

    Praying for you.

    • @wanderingmusic38
      @wanderingmusic38  Год назад

      Thanks Al. Hope you are thriving in your new career!

  • @patriciaernst5726
    @patriciaernst5726 Год назад

    I am and have been praying for you and your family. Thank you for sharing your story. It helps to know what to pray for. Love to you all!

  • @JKM05
    @JKM05 Год назад +1

    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.

  • @sarahsychen
    @sarahsychen Год назад

    Three Idiots is one of the best Bollywood movies ever!!! I even bought the soundtrack.😆

    • @wanderingmusic38
      @wanderingmusic38  Год назад

      Aal iz well!

    • @Srijasrinivasnadipineni
      @Srijasrinivasnadipineni 11 месяцев назад

      ⁠@@wanderingmusic38 watch zindagi na milegi dobara, it’s a Bollywood movie too.. don’t get low.. you will win at the end 🤞😊.

    • @wanderingmusic38
      @wanderingmusic38  9 месяцев назад

      Thank you for the recommendation, I will check it out!

  • @andthesunsets
    @andthesunsets Год назад

    I started laughing when you start talking about the hand sanitizer.. sorry...

    • @wanderingmusic38
      @wanderingmusic38  Год назад

      at least one person finds me funny then! I'll take it!