• Michele Ayers became a registered member 6 months, 1 week ago

    • Good morning! I am looking forward to learning and sharing on this site.
      I was recently diagnosed. I have my chest ct in a few hours. I’m wondering what percentage of people have the thymectomy with or without thymoma. And how do you feel after a week of recovery and how much do you worry about being immune suppressed? A Lot of questions…just nervous for today
      Michele

    • Hello, Michele! We are thrilled to have you as part of our inclusive and judgment-free community of MG patients, caregivers, families, and medical professionals! Within the Myasthenia Gravis News Forums, we implement a safe space to share and discuss experiences, information, and news and offer guidance and support.

      I am so sorry I am just getting to this! I had a flare hit the day before you messaged. You are one of the first few I finally have time with my energy recovering to reach out to! How did that chest ct go?? I would love an update.

      That is an excellent question about the thymectomy with or without thymoma percentage! I honestly do not know the answer, and a research study may be limited. I will ask in the forum this week to see if we can get an idea. We have a large community, considering how rare the disease is!

      Before talking about my personal experience and those of others, are you considering transsternal or robotic surgery? Or considering both? I also have anxiety, so always understand the nerves and worries of our immune systems that others feel comfortable sharing 🙂 I would love to chat more!

      Please familiarize yourself with our forum rules in the “About Our Forum/Welcome Lounge-Using Our Forums” topic, our privacy policy, as well as our terms of service. Feel free to contact Michelle or myself with any further questions that may arise!

      • Thank YOU Jodi!. I am sorry to hear you had a bad day. I know it’s been a long time since I joined. I kind of went into denial. Right now my left eye is completely closed and it’s only after 5pm.
        Thank you for asking abou.t the chest scan. It was negative so that was a comforting surprise.
        The mestinon and prednisone were overprescribed and I had awful side effects for the first few weeks. I was trying to follow the “expert doctor’s from UCLA advice” turns out he denied prescribing the amount even though it was on the bottle and on the electronic note to the pharmacy. Then my regular neurologist went on maternity leave. So..that’s enough of that story. My concern is do I need to be on mestinon at all if it’s side effects outweigh the benefits? I just got new glasses for distance and near…but they already are not as good as the were 4 weeks ago…that’s frustrating..and the blurriness and double vision is worse as well. oh, my gosh the side effects of prednisone! I barely bumped my leg and I looked down and had a huge gash that required 6 stitches!..seriously..it should have just been a scratch and a bandaid if anything at all. I’ve gained so much weight and my face has fallen to my shoulders…but then that’s just the tip of the iceberg, right? My neurologist doesn’t have any patients on the treatment that was approved last December. I know I”m rambling..I just wanted to thank you and say that I”m scared..and that I haven’t told most of my family. I just don’t want them worrying about me…OH< I had a scare..and I don't know if it was ..I have low blood pressure..but the other day I was packing for a trip and all of a sudden my heart was racing and I couldn't catch my breath, couldn't sit up…didn't know if it was an mg crisis…I had to call 911 from my bed..they took an ekg and transferred me to the hospital…and they took another test there…they didn't find anything and 5 hours later and 400 dollars more…I was on the plane to see my daughter…how do I know if it's an mg crisis? oh, I dind't want to tell the paramedic I had mg because my mother was there!…but now I realize they HAve to know, right/ Do you carry a card or anything?..ok..that's so much…I just need to make some friends here..and be a listener for others as I navigate this unknown….thank you….I hope you have great days ahead

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