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| Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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10-07-2009, 06:43 PM
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Hello all!
 It is so great to be back! I have been REALLY weak as of late.....fell over trying to put on my pants and just too tired to type..........  Anyway - today has been a GREAT day! I read all of the new posts and am so excited that we have a Pastor AND a Dr! How exciting! I have started on a new drug - Neurotin (sp?), so I no longer wake up with that horrible burning sensation in my legs and feet but still am really sore. I shuffle like an 80 yr old but am so grateful that I don't hurt like before! Is anyone else on Neurotin? Do you know what it is for? Does it make you sleepy? I have been so tired recently......though it may be b/c I'm down to 20 mgs. of pred instead of 40/60 on alternate days and am taking the time-span Mestinon in the morning and night. I will be going in every 3 weeks for 3 days of IV IG - that port has been AMAZING! I've also lost 20 lbs recently - YAY! My grandparents are coming in tomorrow - it is going to be wonderful! They are so sweet! It is a long drive from Terrell, but they are still willing to do it - even in their 80's! Enough about me - how are all of YOU feeling? Connie - I read your posts - you are so brave! I am so sorry about your father. Joanmarie - what a miracle that you were able to save your hubby's life! I hope that his surgery goes well! Can't wait to hear from all of you! Love, Erin  PS - Welcome to all of the new members! You are going to love this site!
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Erin . |
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I'm baaaaaaaaaaaaaack!
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