My Myasthenia

By: Jesse Morgan
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  • Summary

  • A podcast to share our stories, journeys, and discoveries regarding the crazy disease Myasthenia Gravis. Each week we will talk with a different guest about their experience with the disease, and share insights on how to best cope with the condition. We will laugh together, sometimes cry together, but most importantly learn together. Support this podcast: https://podcasters.spotify.com/pod/show/mymyasthenia/support
    Jesse Morgan
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Hygiene & Healthy Living
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Episodes
  • What happens to your body in the heat?

    What happens to your body in the heat?
    Jul 19 2023

    In this episode, we delve into the effects of extreme heat on our bodies and explore effective measures to minimize its impact. Discover the science behind staying cool and learn what strategies actually work in combating scorching temperatures.

    --- Support this podcast: https://podcasters.spotify.com/pod/show/mymyasthenia/support
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    19 mins
  • Sheila’s MG Story

    Sheila’s MG Story
    Dec 13 2022

    On todays episode, we discuss Sheila’s process of discovering she had MG, how she passed her antibodies to her newborn daughter, and more!

    Check out Sheila's band here! https://sheiladeemusic.com/  Spotify: Sheila Dee

    Sign up for the Make Your Year MG Strong at our Website! MyMyasthenia.com

    --- Support this podcast: https://podcasters.spotify.com/pod/show/mymyasthenia/support
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    1 hr and 5 mins
  • What to Expect with IVIG

    What to Expect with IVIG
    Dec 3 2022

    Today's episode of My Myasthenia is all about IVIG – what it is, what to expect from your first injection, and more. We'll be discussing the basics of IVIG and how it can help those with myasthenia gravis.

    And don't forget to follow us on Instagram (@MyMyasthenia) and Facebook (My Myasthenia Podcast) for the latest updates and information. We're excited to announce our Make Your Year MG Strong event, so be sure to stay tuned for more details coming soon!

    --- Support this podcast: https://podcasters.spotify.com/pod/show/mymyasthenia/support
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    35 mins

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Profile Image for Nathalie Payton

Glad to hear someone talking about it

Just started listening to your podcast. My symptoms started 8/5/17 and it took more than 3 years to get diagnosed. I hear a lot of stories about people who had symptoms start light, but mine was like a light switch. One day I went to bed feeling normal and the next morning I struggled to breathe, was severely dizzy, couldn’t keep my eyes open, couldn’t stay awake, could hardly do anything. I would have better days but it was pretty much like that until I got on mestinon. So many doctors, family, others told me it was stress. I even went to Mayo Clinic twice. I couldn’t work, I couldn’t drive without nearly killing myself/others. I also have a lot of other health issues, I’ve been immune compromised since birth, history of severe asthma, chronic migraines, and others. I’m double-seronegative MG, which not all doctors even believe is a “real” thing, but having a thymectomy and taking mestinon have saved my life. I haven’t listened to all the episodes yet, but if you haven’t spoken to anyone who’s had some of the difficulties I have, I’d be glad to share.

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Profile Image for Jack davis

Dealing with MG

My wife sent me a link to your podcast. I'll be listen from now on to get other peoples thoughts and treatments. I was diagnosed with myasthenia gravis around 18 months ago. My symptoms started with double vision that would happen every morning but clear up after 15-30 minutes or so. As time went on it got longer and longer. While this was happening to me my wife had surgery and severe complications and almost died. The stress and worrying about her made my symptoms go into overdrive. Once she was better then we started to find out what was going on with me. Finally after seeing 4 eye doctors the last doctor had blood work done that's when we found out. My levels were 4.4 when normally its around .3, .4. I've tried 2 different medications with no signs of improvement. I've been having IVIG treatment the last 4 months 3 days in a roll 5 hours each day. As of now I have noticed any improvement in all honesty I believe my symptoms have worsen since starting the IVIG. I have 2 months left of IVIG infusions then I don't know what will be next. The sickness and pain caused from the IVIG is 10 times worse the MG. Hopefully I'm able to get something that will help.

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