Out of the hospital
 

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, :)

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.

:hug:
Nicky

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.

sat's while in the hospital, tough for sure,hope you scored well.

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...

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!

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

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

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

-Joan- Thanks. I want to go to UNC, so hopefully with everything Ive been through there, everything will work out. Your right, the pressure was even higher. But i did it, and hopefully did well.

im glad i could provide something helpful on the post.

Thanks, i hope your doing well, too.

Um, im not sure if it is spasming, but it just feels stuck for about 20 minutes after i eat.

I take my meds after i eat, so im not sure, but the meds arent working for me yet either, so i cant tell if its taking longer for them to work or not.
.

Thanks for your encouraging words! I hope this disease hasnt got you to down.

How are you feeling

Kate- Thanks! im sure happy too, but 5 days of school a week, is definetly getting hard...would you suggest going 3-4? Idk.


I think they will improve, i just need to take it easy..

thanks for your help..
how are you feeling

Hi Tyson,

Yes I think 5 days would be too much, unfortunatley it will be up to how you feel, as to how much time you spend at school, you will need to learn to listen to your body very carefully.
When I was working, if I woke up and couldn't brush my hair, well that was my body telling me not to drive the 30 minutes to work, cos I knew I wouldn't get home!!
So listen to your body, and take note. Are you able to talk to teachers and get help from them?? ie, get work to do at your own pace at home? It must be so hard having to worry about all this at such a young age.

Yes you need to take it easy, but thats an easy thing to say, much harder to do, I long to do things, and my brain is willing but my body has other ideas. At the moment we are having hot weather, going to be 36C today, and I am paying for all the heat, so Iam able to do less than I'd like, I still find myself pushing myself, and paying, even after 7 years. I do however know when I have to stop and have an afternoon rest, I don't sleep, just lay and relax.

Hope you are having on ok day
Kate

Hey Tyson, glad you're back home. Hope you did well on your SAT's. I was thinking; maybe if you eat just a small amount of your meal and then take your meds, then wait about 15 minutes or so before finishing your meal it might help. That way you are still taking your meds with food, just not as much so they may work better and it might help with that stuck feeling. Just a thought.;)

Hugs,
Pat

Hi good to hear from you,life could be better, but I m ok
sorry for not being much in touch, but life has been hectic, hope you all are ok