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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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11-13-2008, 03:41 PM | #11 | |||
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Hey guys! How are you doing today? I hope all is well!
Brian - you'll be back @ work before you know it! My gp started me on some serious anti-biotics yesterday, b/c the other ones were not effective @ all, so I'm hoping 2morrow will be better! Either way, I see my neuro and he'll decide what he feels is in my best interest. I just really do not want to go back to that hospital! I seem to pick up a bug every time I'm in there - filthy places, really! I'm still pretty weak, but figure that if I rest enough 2morrow will be better! My mom is coming over tonight so we can watch the history channel and I love Lucy - FUN!!!! Oh, my hema thinks that if I do have to have the plasmaphoresis or IV IG I can do it as an outpatient procedure - yippee!! Take care! ERin
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11-13-2008, 09:00 PM | #12 | |||
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Hi Erin,
I'm glad your GP seems to be sorting things out for you. I can understand you not wanting to go back to hospital, I went back as a day case for my IVIG, and yep that was enough for me. It really tired me out, they dont seem to understand even tho I was in a chair that partially layed back, it still is very exhausting sitting up, they don't get it, so I've given up trying to explain that it would be so much better for me in a bed. Still I guess I'm lucky to be able to have IVIG at all!! Hope you have a good night tonight redtail |
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11-14-2008, 11:19 AM | #13 | ||
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I'm not sure if it's available in the States but over here there is a vaccine for pneumonia that my doctor recommended at the same time as the flu jab. Since it's not a live vaccine it shouldn't interfere with anything either. It's probably too late for this year (esp if you have already got pneumonia) but maybe something to look into for next year! You could try to realtionalise (HA) with your insurance providers saying that one jab - vs a 2 week stay in hospital would be a better deal. Although maybe Erin with your needle-thing you wouldn't want it anyways!!
My husband has had the flu now for 10 days - it's hard to keep both of us going but I'm coping. I'm just so thankful I didn't get sick too! I'm still not sure how I escaped it... especially with all my immunio-suppresant meds. I have had some other bad news on that front... but I'll survive. Stay healthy! ~KAthy |
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11-14-2008, 01:21 PM | #14 | |||
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I should have gotten the pneumonia vaccine! I am kicking myself! What was I thinking? I shoudl have known better!!!!!! Well, now, I'm stuck!
I am going in next week for IV IG - 5 days in a row @ 400 cc(or is it mgs?) a day - they will start a PICC line Monday, and my neuro wants me to be in every day before 3 so he can check on me.......... Enough about me - what's going on with you? Are you OK? Do you need to talk? You do know my hotmail address, right? If not, then I'll pm the info. I don't know if there is anything I can say or do to help, but I'd love to try!! I can't wait to hear from you! Erin Quote:
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11-14-2008, 04:52 PM | #15 | |||
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Hi Erin
Hey your still poorly i was hoping you would be fit and well!!!!!!!!!!! maybe once you get those 3 painful teeth sorted you can get healthy again gosh what a lot of med's you have to take....... i'm sure you will have a nice talk to Devon you take care Alan Oh i'm having a fab time with Jen and Gosh she's looking so lovely feel so lucky |
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11-14-2008, 05:02 PM | #16 | |||
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I am so happy for you! It sounds like you are having a wonderful time!!!
Devon and I had a really good heart to heart - I think we have everything settled now!!! I know once I have my IV IG I'll feel great! Plus, it does help with my teeth, so that is another blessing! My mom is coming over 2nite to help take care of me. We are going to have so much fun! Maybe watch some Hitchcock or Agatha Christie - who knows? How are you feeling? Are you still walking a lot? My neuro increased my pred to 20 mgs and reduced my cellecept to 1000 mgs a day - that will definitely make me feel stronger! And hungrier!!! Yay! Have you ever had IV IG? I call it "liquid gold" b/c it makes me feel GREAT!!! And it makes me look like I've had an eye job (added bonus)........ Thanks for checking in! I always love hearing from you! Have a wonderful time with your daughter!!! Erin
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