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Old 09-18-2009, 11:49 PM #1
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Heart Hi Joanmarie!
Hi Joanmarie! They smile cuz' I bring them pizza! LOL! Actually I am just so grateful to the whole staff @ the Methodist

I love your ideas as well! They are great!

Do you mind my asking why you are afraid of IV IG? Have you has a bad experience? For ME it has truly been GREAT! I don't even have to premed b/4 - just drink lots of fluids and I feel 100% It even gives the appearance of a mini eye job! LOL!

As for the pred., I am so happy to be going down! My entire body is swollen and it is starting to give me major anxiety......Don't get me wrong, I'm still VERY grateful for it, I just need a break for a while!

40/20 should do the trick. I may be a little weaker for a while, but I am blessed enough to not HAVE to work @ this point, so I can stay on the sofa all day if need be!

How are you doing?

THank you for the ideas! I really appreciate them!

love,
Erin









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Originally Posted by Joanmarie63 View Post
Only you Erin, I bet the hospital and Dr staff smile when they know you are coming because your attitude is so inspiring! I like DesertFlowers idea. Mints or hard candies to suck on is always a good idea because that way if they have weak facial muscles they can just let the candy "melt" and the flavor last a long time.

As for the IVIG and Pred.. I can't take pred as I react to badly to it and I am afraid to try the IVIG but if I go into a crisis I will try it Now when I did take Pred many years ago, I was on 60 everyday for a year and then weaned ogg it for a year, then remission

Good luck my MG friend
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Old 09-19-2009, 01:54 AM #2
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Wow Erin,

You are really amazing, thinking of everyone else in hospital!!!!
In answer to you question, I get ivig, only when I crash, because in my nuero's words "IVIG is very expensive and hard to get hold of, and other people need it as well", end of story, I'm not bad enough to warrrant ivig unless I crash ie, double vision weakness etc etc, which is good I think cos its such a long and stressful day for me.
Kate
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Old 09-19-2009, 06:40 AM #3
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Thumbs up Hi Kate!
Hey hon!

How are you feeling? I am soooo looking forward to the next round of IV IG! I guess the dr's dx of acute MG is the reason I'm going to have it so often - I'm "lucky" that way Funny. I don't feel lucky.....

Maybe I'm in denial, but I don 't feel like I have acute MG........THe one thing I do know is how good everyone tells me I look after I have it done - guess I must look like hell before!LOL!

We are FINALLY getting some cooler weather here! I cannot wait for our cold weather! You should have seen it in Allegany! It wwas in the 40's and I was outside wearing the thinnest pj's I own and no shoes - I could feel my face going down......Happiness is cool weather!

Hope this finds you strong and happy!

Love,
Erin








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Wow Erin,

You are really amazing, thinking of everyone else in hospital!!!!
In answer to you question, I get ivig, only when I crash, because in my nuero's words "IVIG is very expensive and hard to get hold of, and other people need it as well", end of story, I'm not bad enough to warrrant ivig unless I crash ie, double vision weakness etc etc, which is good I think cos its such a long and stressful day for me.
Kate
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Old 09-19-2009, 10:34 AM #4
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Erin,

The reason I am afraid to try IVIG is because I suffer bad reactions from anything I take. And well to be honest here, I am so tired of the side effects of things I would rather be weak from the MG only, at least than I know what the weakness is from and I can relax, but not knowing what a medication will do to me, well I just get to stressed out.
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Old 09-19-2009, 02:20 PM #5
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Heart Hi Joanmarie!
Hi sweetie! I should have remembered you were so allergic - open mouth, insert foot! LOL!

I agree about the side effect thing - everything we take seems to have WICKED ones.......even IVIG and the other......, however for ME it just seems to work!

How are YOU feeling today?

Love,
Erin







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Erin,

The reason I am afraid to try IVIG is because I suffer bad reactions from anything I take. And well to be honest here, I am so tired of the side effects of things I would rather be weak from the MG only, at least than I know what the weakness is from and I can relax, but not knowing what a medication will do to me, well I just get to stressed out.
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