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Old 12-03-2009, 10:16 PM #1
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Default Another update

Hey Guys, its been a few days, or a week or something along those lines..

I just got out of the hospital today, after 4 plasmapheresis procedures and 6 days in the hospital. So glad im out of there. yet i do have plasma exchanges tomorrow, monday and wednesday.

It seems to be helping, though..
It is very ahrd to believe a few days ago i could hardly walk, and could chew or swallow, now i feel great.

I also started prednisone, which i have a question about, being a typical teenager.

Can you drink on this medicine? I am a very responsible kid, and havent done it for a long time, because im usually the driver, yet sometimes its fun to do it with friends.

Im completly fine with not drinking, i just want to know what it can do.

Thanks^.


But i know i have to take it easy, and all and i plan to, becuase i dont want to go back into a crisis. (Is it possible to go back into crisis while on prednisone?)

My uncle thinks i should take the SAT on saturday, im not doing it, or gonig to school until tuesday of next week. this is my body, and without it, i cant be doing that stuff so i need to keep it healthy.


THANK YOU for those who pressured me to go to the hospital. Much worse things could have happened. You are life savers. Now i will be able to help those out who are in my position.
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Old 12-03-2009, 10:41 PM #2
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Hi Tyson,

so glad your stint in hospital has helped

Not sure about having alcohol with pred. I use to drink before mg, but now just a tiny amount of alcohol sends me into a downward spiral, which really sucks, cos I use to enjoy a icy cold beer on a hot Aussie afternoon.
Ah well.

I'm glad you're not rushing back to school, I'm sure it must be hard having to take your SAT's with all this going on at the moment.
Hope everything keeps improving
take care
Kate
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Old 12-03-2009, 10:52 PM #3
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Hi Tyson,

S glad to hear you are feeling better. As for the alcohol thing, I also can't drink anymore...I tried having one glass of wine with dinner a few weeks (months?) ago, and totally crashed for the whole night, within a half hour I could hardly move...It's definately a bummer, with 3 kids a girl really should be able to relax. I would avoid alcohol unless your with someone who can watch you and get you help right away if you need it, and definately wait until your on more stable ground.
Jess
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Old 12-03-2009, 11:09 PM #4
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Quote:
this is my body, and without it, i cant be doing that stuff so i need to keep it healthy.
That's the most sensible thing I've heard you say since your crisis!!! I'm so glad you are doing better. Seriously, you had some awesome care.

It's so true. If you aren't as healthy as you can be, you can't do squat.

Drinking is not something you should consider right now. It is a muscle relaxer and WILL make MG worse. The times I have tried to have a little alcohol (a couple sips), I have woken up in the middle of the night unable to breathe. It took fifteen or more seconds before I could actually breathe in. Very scary. Your muscles get weaker at night when you're sleeping.

When you are much better, and you think about drinking, have some in the morning or for lunch! I know, that may make you look like an alcoholic but it's better to drink earlier in the day when your MG is better.

Did anyone say to take calcium and vitamin D while on Pred? Flax or fish oil? And keep a lookout for any infections.

Did they do or suggest any cardiac workups? Did they figure out what happened during that one plasma episode?

No one is very shy around here when it comes to a crisis or nearing one. You were as close as someone could get. I'm so glad you went in. Now you can get better faster.

Hang in there. I know this is all new and tough on you. If I had known at your age that I had MG (had it since birth), I'm not sure I would've handled as well as you are.

Annie
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Old 12-03-2009, 11:49 PM #5
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Default glad everything is going you way now

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Originally Posted by AnnieB3 View Post
That's the most sensible thing I've heard you say since your crisis!!! I'm so glad you are doing better. Seriously, you had some awesome care.

It's so true. If you aren't as healthy as you can be, you can't do squat.

Drinking is not something you should consider right now. It is a muscle relaxer and WILL make MG worse. The times I have tried to have a little alcohol (a couple sips), I have woken up in the middle of the night unable to breathe. It took fifteen or more seconds before I could actually breathe in. Very scary. Your muscles get weaker at night when you're sleeping.

When you are much better, and you think about drinking, have some in the morning or for lunch! I know, that may make you look like an alcoholic but it's better to drink earlier in the day when your MG is better.

Did anyone say to take calcium and vitamin D while on Pred? Flax or fish oil? And keep a lookout for any infections.

Did they do or suggest any cardiac workups? Did they figure out what happened during that one plasma episode?

No one is very shy around here when it comes to a crisis or nearing one. You were as close as someone could get. I'm so glad you went in. Now you can get better faster.

Hang in there. I know this is all new and tough on you. If I had known at your age that I had MG (had it since birth), I'm not sure I would've handled as well as you are.

Annie
thinking and praying for you Patrick.
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Old 12-04-2009, 12:00 AM #6
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Hey Tyson,

I just read about what happened to you and I'm so sorry things have been so rough lately! It's excellent news that you're doing much better now- plasma exchange can be a real saviour, but sometimes, you can have a bad reaction. I sorta had a similar reaction to what you had last time I had one...My BP got super low, lost peripheral vision for like 10 mins., right hand went numb- scary stuff! I'm glad that everything worked out for you, though, and you're feeling stronger!

I agree with everyone here that alcohol and MG don't mix well...I haven't tried drinking while on prednisone, but I did look into to see if it was safe. Apparently, it is 'okay,' but the side-effects from the prednisone will be increased. For me, with the MG, various other health issues, and the predisone, it's not worth it to try it. But everyone's different. Just be careful!

Nicky
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Old 12-04-2009, 05:56 AM #7
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Default Another Update

Hi Tyson,
I haven't been posting much lately but have been following your progress. I am so glad you are doing better. You definitely did the right thing by going to the ER. You are smart to take it easy for awhile too. I can tell you I started Prednisone a few weeks ago and it has made a world of difference!!! Most days I feel like the old me outside of my insomnia which I just posted a thread on. I think once it kicks in you will be amazed at the results. Just remember that even when you feel good to pace yourself. I need to do better at practicing what I preach but I do try and schedule a break in my day even if it is only 15 minutes to lay down and rest. Just wanted to say thanks for keeping us posted and I'm glad you're feeling better!
Kendra
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Old 12-04-2009, 11:12 AM #8
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Congrats - on getting sprung from hospital!

I am so glad you are improving and feeling better....and thrilled with your outlook and desire to keep it slow for now.

While I am so sorry that you had this episode, I am actually grateful that it was such a wonderful learning experience for you (that worked out with a good ending!).

Sue
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Old 12-04-2009, 11:58 AM #9
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I agree with what others are saying here about alcohol. I used to like a drink now and then for inspiration. It is definitely not good for MG, but I like Annie's idea of trying some in the morning or for lunch, lol. I am going to try your idea Annie, but only on a good MG day. I wonder if anyone will join me...

Tyson, I hope you are feeling better.


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Originally Posted by AnnieB3 View Post
When you are much better, and you think about drinking, have some in the morning or for lunch! I know, that may make you look like an alcoholic but it's better to drink earlier in the day when your MG is better.
Annie
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Old 12-04-2009, 12:02 PM #10
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One should not drink while using Prednisone.

Pred is very hard on the stomach, and gastritis or gastric ulcers can form easily with people taking it alone. Add the alcohol, and you have a recipe for perhaps a bleed in worse case or at least inflammation, vomiting, heartburn, in minor cases.

I can't comment on the MG connection, and leave that to others here who have experience and knowledge with it.
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