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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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#1 | |||
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Senior Member
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Hello all! Sorry I haven't been on lately.....that concert just wiped me out! Today was my first good day in a week so I took advantage of it and got a lot of work done - it felt GREAT!!!!!!!
Monday I start my next round of IV IG.....my neuro wanted to do it while he was in town so he could check up on me while I'm in - I love that man! Still have my PICC line in......looked great when they checked it on Thursday- thankfully...... ![]() I'll be in all week (outpatient) but will get 500 mL a day X 5 days.....hopefully that will make me feel like a million bucks! I do hav thrush and some teeth that are abcessing, so that could be why I have been feeling crappy, but it still scares the heck out of me......... Are any of you on prenatal vitamins? Iron? I seem to take sooooo many pills now! Lat week I bought 4 scipts and it was $200! $200! Oh and they didn;t have any generic............augh! If I am lucky then my pred will be reduced after this nexr round.....those of you who do pray, please do so! I have gotten to the point that I shake so bad I can barely write my own name. I did get controlled release xanax, but it doesn;t see to help all that much! I've missed all of you! ![]() ![]()
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Erin . |
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#2 | |||
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Hi Erin,
Hope all goes smoothly on Monday, and the following week. Take care, and I will put up some photos of my trip down south when I have recovered and have some extra energy.
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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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"Thanks for this!" says: | erinhermes (03-31-2009) |
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#3 | ||
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Junior Member
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#4 | |||
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Magnate
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hugssss, not sure much about your disease, but it does not sound too fun! just wanted to say hi and give you HUGSS wishing you luck with the IVIG!! hugsss,sarah
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. KEEP SMILING, LIFE IS TOO SHORT TO WEAR A FROWN!! . |
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"Thanks for this!" says: | erinhermes (03-31-2009) |
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#5 | |||
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Good luck with the IVIG!
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Cyclical Pituitary Cushing's, Addison's via bilateral adrenalectomy, Growth Hormone Deficent, Migraines, Trigeminal Neuralgia, Hashimoto's, Hypothyroid, Myasthenia Gravis? |
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"Thanks for this!" says: | erinhermes (03-31-2009) |
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#6 | ||
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Grand Magnate
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Erin, I have gotten my vitamins from www.iherb.com since 1999. They are so much less than the stores. I could not afford all of what I take if I got them in stores.
Since you're on Pred, you do need to take more supplements. It's a good thing. I think a few, appropriate supplements is a great idea. It's between you and your doc to decide what works for you. I hope the IVIG goes well. Annie |
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"Thanks for this!" says: | erinhermes (03-31-2009) |
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#7 | |||
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Senior Member
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![]() I am so proud of you! You are so brave!!!!!!! ![]()
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Erin . |
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#8 | ||
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PICC lines suck, Erin. They also get infected. During one of my many hospital stays last year, the brilliant folks who chose a PICC line instead of a normal IV line came in to announce to me that I had a staph infection. I knew I had some sort of infection, judging by the size and color of my arm. Problem was that I was all better, except for that. My hospital stay was doubled and my roomate was a 400 pound 24HRTV-watcher, eater and farter. I was furious!!!
Anyway, good on you for the IV-IG. It's about one of the only treatments that works. Now get on some hyper doses of prednisone and prepare to feel like a teenager again. Curt Quote:
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"Thanks for this!" says: | erinhermes (04-05-2009) |
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#9 | ||
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Member
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Hey Curt,
You wouldn't happen to work for a Prednisone manufacturer, would you? Just kidding! Couldn't pass it up, I hope this doesn't offend you. Becky
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Becky Last edited by ras1256; 04-02-2009 at 11:59 PM. Reason: reword |
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"Thanks for this!" says: | erinhermes (04-05-2009) |
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#10 | ||
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Curt |
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