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| Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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01-20-2009, 03:40 PM
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Just got through with my neuro......I'm going back in a few weeks for more IV IG - wow! Thought I was through with it for a while @ least.........I guess I'm not doing as well as I thought I was.............scary!!!!!!!
 I was really hoping that I could have my IV IG @ home - not meant to be, I guess, since there is a picc line involved........Don't get me wrong, I am very grateful to even be getting IV IG, I just thought it would be over sooner....... Still @ 60 mgs of pred - hopefully will go down after the IV IG - then the Imuran will be kicked up to 200 mgs a day............ What the heck!?! MG really sux!!!!!!! TRying to stay positive - I do have a family that I want to take care of and don't want to be a bitter, mean person, but am feeling lost today ..........Erin
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Erin . |
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01-20-2009, 04:12 PM
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Oh Erin,
I'm so sorry to hear that! I'm glad your neurologist seems to be taking care of you though. 200 mg of Imuran surprises me - you are quite petite aren't you? I guess they are just trying to find the perfect balance for you. Just think of the IVIG as your oil-change! A little top-up will keep you going at full speed. I'm sure you'll be feeling better in no time - remember 2009 is going to be YOUR YEAR! I'll be thinking of you. ~Kathy Quote:
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01-20-2009, 04:32 PM
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Hey Erin
Have'nt you only just come out of hospital again does'nt seem right and can't be very easy to stay positive even with your two great men ..... what you need is some of our weather to keep you cool anyway just want to wish good luck !!!!!!!!!!!!!!!!!!!!!!! Oh got my younger son James flying back tonight after his year in Australia so i'm excited hugs Alan |
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01-20-2009, 04:51 PM
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HEy Kathy!
Yep. I am bummed. I really thought I wouldn't have to go back in so soon, but am glad that it will be over soon! IV IG always makes me feel like climbing Everest, so I know I'll love it once it's over with!!!! I weigh 145 lbs now - I don't know how much Imuran I should be on right now - I hope it does it's job and gets me the heck off of the roids! I keep telling myself tomorrow will be better - and it will! It's the "what if's" that keep running through my mind - I mean, I know I've had this for years......I wonder if they had found it sooner if I would be doing better...............I never thought I'd be @ the hospital so often. When I was little, I was always there with my Gram and always hated how creepy it was.........just seems like I won't get out any time soon!!!!! On the positive side, they are amazing there and so sweet! I was so glad to hear that YOU are feeling better!!!! That is awesome!!!!!  Erin Quote:
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01-20-2009, 04:52 PM
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Alan ~ you are so sweet! It will get better! MG just sux - there is no other word for it!
I bet you have a blast with James!!!!!!! ErinQuote:
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Erin . |
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01-20-2009, 05:03 PM
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Hugsssss hun, not sure what MG is...maybe I will read about it..sorry you have to do the IV thingy again so soon, hugssss,sarah
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. KEEP SMILING, LIFE IS TOO SHORT TO WEAR A FROWN!! . |
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01-20-2009, 05:19 PM
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THank you! I really appreciate it!
ErinQuote:
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Erin . |
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01-20-2009, 08:53 PM
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Erin...
I'm curious to know how long your neuro has been practicing and how many patients with MG he has treated. Do you have any idea? Lydia |
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01-20-2009, 09:48 PM
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He has been practicing 27 years, but I do not know how many others patients he has with MG.............
How are you? Erin Quote:
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01-21-2009, 03:33 AM
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Hi Erin,
I'm not sure exactly what the formula is for Imuran (I'm sure someone will correct me though). As far as i can recall though I think it is 2 mg / 1 kg so 200 mg seems high if you are only 145 lbs. I weigh a bit more than you and am at 150mg. I'm sure it's fine and the doctor's know best, i would just hate for anything else to happen. I'll be thinking of you and sending positive thoughts your way! Take care! ~Kathy Quote:
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Back to the hospitalfor more IV IG!
good luck
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