2018 MG Conference: Remission - What, Why, How 14

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  • Опубликовано: 17 ноя 2024

Комментарии • 16

  • @oldtimefreedom
    @oldtimefreedom 10 дней назад +1

    I’ve been in remission for more than 8 years. I have videos about my journey.
    For me fasting, diet and high dose vitamin D3 was key to getting off meds and getting in remission.

  • @bennguyen1313
    @bennguyen1313 3 года назад +2

    I understand the thymus isn't super useful for an adult... so why is thymectomy usually only performed for GENERAL (not ocular only -- InterNuclear Ophthalmoparesis / Ophthalmoplegia , ptosis and diplopia ) MG, and only if there is hyperplasia or abnormal growth?
    Regarding remission, if long-term treatment can halt/reverse the progression in < 25%... if left untreated, would the disease most likely to spread from the eyes to the rest of the body (ex. bulbar)?
    Does Thyroid-Eye-Disease have any role in Ocular MG?
    I've seen some great videos by neurologists that specialize in MG (Michael Hehi , Ali Hamedan , Devin D. Mackay , Dr. Maria Lina Renales ,etc), but they aren't local.. anyone know of a specialist that can do a remote consultation?

  • @conniesanchez534
    @conniesanchez534 4 года назад +2

    My daughter got diagnosed with Ocular MG when she was 14 years old. She had severe double vision and lost control of her eye movement. It was a long road before we had a full diagnoses. Untimely we she had a Thymectomy when she was 16 and she is 18 now and takes no medication. I haven't heard a lot about the Thymectomy.

    • @MrMsZoro
      @MrMsZoro 3 года назад

      I got it when i was her age and now i am 22 years old. For a month now i feel severe double vision too and almost losing control my left eye i take medications but still no progress and my doctor going to give me Rituximab then ill see if that helps. I just wanna ask did your daughter recover her eye ? I hope , its a difficult disease but keep her mental up it makes different tbh .

    • @MrMsZoro
      @MrMsZoro 3 года назад

      And i had thymectomy too.

    • @veravero5715
      @veravero5715 3 года назад

      Dear Riku
      How are you doing?
      How is this new med for you?
      Have you ever got IGIV?

    • @veravero5715
      @veravero5715 3 года назад

      Sorry IVIG

  • @joshuavollrath3671
    @joshuavollrath3671 3 года назад

    Right before he passed away he sent me a message about how he would get into the tub after turning his water heater up to almost 150 now I see that he doesn't affect mg very well he says that she bought him a heating blanket for his bed and apparently he had had him thinking that heat would be good for it I guess...

  • @joshuavollrath3671
    @joshuavollrath3671 3 года назад

    He had a surgery similar to open heart surgery when he was first diagnosed,....
    so I do believe they had removed his thymus gland....

  • @veravero5715
    @veravero5715 3 года назад

    Thank you.

  • @joshuavollrath3671
    @joshuavollrath3671 3 года назад

    Hello my name is Joshua....
    My father is diagnosed with mg around age 35 I believe....

  • @estherbabbu5084
    @estherbabbu5084 4 года назад

    IVIG treatment how does it work in severe Myasthenia gravis

  • @leonidasgarcia1039
    @leonidasgarcia1039 5 лет назад +2

    Yo tengo miastemias y toi es perando. Por una cura. Ya k esta enfermedad tienes mucho mas de un ciglo. Ya tienen k buscarle la cura

  • @1Rennae2
    @1Rennae2 2 года назад +3

    Look into MG remission with large doses of Vitamin D.

    • @helenokezie1614
      @helenokezie1614 2 года назад

      Please how do you take vitamin D? Is it 1daily or what