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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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01-27-2010, 04:14 PM | #1 | |||
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Monday I was released from the hospital, after a baruim swallow test, examining my ability to swallow...as im sure some of you have gone through that gross test.
Yet. They just found that my muscles towards my stomach in the esphogus are quite weak and need to be watched. But they let me go home, for theres nothing else to do but wait for the meds to kick in. I then had another session of plasmapheresis, and left. The swallowing is getting better, yet not like it used to be. Today i went back to the hospital to get more plasmapheresis, and just got back. Still having troubles swallowing and such, yet its better than the other day, as with breathing. but talking in long convos, is hard. At school im usually the person who talks the most in class discussions, yet not now. They also made me take the SAT in the hospital. How was i supposed to do good, hooked up to a bipap machine, and other cords hooked up to me...? Not. Oh well. Last night I slept 12 hours..not my thing.. Hope you all are doing well, |
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01-27-2010, 06:06 PM | #2 | |||
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Hi Tyson,
I'm glad that you're out of the hospital and feeling better! Sorry that you had to take your SATs there- it must have been hard to concentrate, but I hope that you did well on them nonetheless... So your esophageal muscles are affected too? When you eat, does it feel like the food just sorta lags in your chest? I get that too when I'm really weak, but I've never had a barium swallow test (at least not since the MG). I know that feeling goes away after PLEX... I look forward to the day when you're feeling much better on a more regular basis...That day is coming soon, you just have to wait a little bit. Nicky |
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01-27-2010, 06:39 PM | #3 | |||
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Thanks Nicky.
Yeah, i have been having that feeling since my thymectomy, so they thought it was something constricting my esophogus, such as scar tissue, though it wasnt. Just slow moving muscles. Imagine. Yeah, today was my fourth plex, and i hope it starts kicking in..it usually works faster. Though like you said, time is my friend. Supposedly. Thanks! you too. |
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01-27-2010, 07:16 PM | #4 | ||
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sat's while in the hospital, tough for sure,hope you scored well.
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01-27-2010, 07:29 PM | #5 | |||
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Tyson,
Does it ever feel like spasming, almost like your heart jumps a bit when the food sits in your esophagus like that? i'm wondering if this is why it takes a really long time for my meds. to kick in at times, and yeah, if this is why it feels like I get heart palpitations after I eat...I always take my meds. with a full meal, so maybe they're sitting in there along with the food... |
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01-27-2010, 08:08 PM | #6 | ||
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Tyson,
I am glad you are home but hate that you had to take the SAT in the hosp. Not like there isn't enough pressure taking it in school. But you are a very level headed young man and I am sure you will do well in life no matter what path you take. You taught me something with this post, as I have the same feeling with the food just "sitting" in my chest and it takes me a while for meds to kick in also {longer than "normal" people} It still amazes me what muscles get effected by MG, I remember when I first learned that breathing was a "voluntary" thing...LOL I hope you get stronger day by day! |
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01-27-2010, 08:12 PM | #7 | |||
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Joan- I couldn't agree more about what muscles are voluntary/involuntary...If breathing is voluntary, then what regulates it during sleep? Also, is the esophagus voluntary too? I thought that it was autonomic as well...I've come across reports on other MGers who've had paralysis of their intestines too...But they said that it was caused by anti-neuronal AChr...
One thing's for sure- this MG is a sneaky bugger! Nicky |
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01-27-2010, 08:59 PM | #8 | |||
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Tyson,
glad you are out of hospital!! Sorry you had to take you SAT's in there, I really don't understand that, you were in hospital for a reason, people in power will never cease to amaze me. Hope things start improving sooooon, take care and yes time is our friend, but I still find it hard to realise that I can't always do what I want with it. take care Kate
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Outside of a dog, a book is a man's best friend. Inside of a dog, it's too dark to read. Groucho Marx |
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01-28-2010, 12:28 PM | #9 | ||
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I hope now (at the time I write this message) you feel better
Nothing I can say can take your pain away, but I do hope that things will improve vey vey fast . Take much care of you sincerely from ..over the water newmg |
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01-28-2010, 06:27 PM | #10 | |||
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Quote:
im glad i could provide something helpful on the post. Thanks, i hope your doing well, too. |
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