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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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10-08-2009, 12:03 AM
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Hey Erin,
Boy, you sure have had a rough go of it lately. I'm so glad the new med is working for you and you're not in such terrible pain anymore. Maybe you'll start having more energy and feeling stronger as your body adjusts to the lower dose of pred. I'm sure the IVIG will help too. Congrats on your weight loss!  Take care and enjoy your visit with your grandparents! Big Hugs, Pat |
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10-08-2009, 12:08 AM
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Hi Erin,
so glad you're on a diff med to help with the burning sensation. Hope you have a great time with your grandparents!! I've got my cousin staying with me,so I'm having fun. Just wish I had a little more energy. I'm off to see my neuro tomorrow, so I'm glad I'm feeling a little seedy and muscle fatigued, he can see me on a bad day. good to hear from you take care Kate
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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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10-08-2009, 02:53 AM
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Hey hon! Thanks so much for the encouraging words - they mean so much!
It HAS been rough, but I know it will be better very, very soon! I see Dr. I 2morrow to schedule my next dose of my "go-go juice" - it SHOULD be next week! YAY! I had some sort of stomach bug that really threw me for a loop, plus the reduction of pred has had me really tired, but I have already lost 20 lbs, so I can live with that! Oh, and my "time" is about to start and I always feel really puny before and during that. I just need to have a hysterectomy and get it over with b/c my endo hasn't made things very easy! I am so happy your son came down to visit! I know that can be the BEST medicine in the world! It will get better soon - I just FEEL it! Can't wait to hear from you! Love, Erin Quote:
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10-08-2009, 03:06 AM
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Hey hon!
What fun! You have your cousin with you? Are you playing lots of card games? I know that is we will be doing once my grandparents get here! LOL! You should see them go! They are like 2 people possessed! I'm hoping to get back up to see Lilli soon! Upstate NY is too beautiful to resist! They actually have lovely homes priced @ 30,000! 30,000! Can you imagine? Once we unload this house and buy a smaller, less expensive one I am going to look into buying one for the summer months - Texas is just too hot for me now! Mike has already agreed to it - he'll just fly up every weekend and visit us. I really hope everything works out!Also, when we aren't using it I plan on renting it to my sis. That way they can move out of my BIL's parents' basement and we can make some money! I think it is GREAt that your neuro is going to see you when you are feeling "off" - maybe then he will be a bit more aggressive! Thank you for checking in on me! Can't wait to hear from you! Love, Erin Quote:
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10-08-2009, 10:11 AM
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Erin,
I started to mention in my other post that the Neurontin will make you sleepy at first. Like I said my son is on it for post traumatic stress syndrome. When the Dr. first started him on it he would fall asleep sitting up and could easily go to bed and sleep 15 hours straight through. He did adjust to it though and now it doesn't make him sleepy at all. When he first started it I tried to make sure he ate something everytime he took it. It seemed like if he had food in his stomach he didn't get quite as tired. Alot of times he just wasn't hungry so I had him try to eat at least a couple of saltine crackers. That is awesome that you have lost 20 pounds!!! I am sure the Neurontin decreased Cole's appetite and he lost weight too. From what I understand Neurontin is used for several things, epilepsy, anxiety and pain that i know of. It may have other uses too. I think once you adjust to the drowsiness you will LOVE it. It has made a world of difference in my sons life. Enjoy your weekend with your grandparents!!! Kendra |
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10-08-2009, 02:01 PM
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Glad to have you back on here Erin! The site just isn't the same without you! I am so glad that you are feeling a little better, IVIG does wonders! So nice that your grandparents are coming to visit. The support system is so CRITICAL isn't it? We just get stronger having those bonds to hold us up. Take care ~ Melanie
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10-09-2009, 12:33 AM
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Hey Erin,
Glad to see you are starting to feel better!!! |
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10-10-2009, 11:25 AM
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Erin,
So glad to see you back, you always make me smile. Enjoy the time with your grandparents, I know I always do
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10-11-2009, 12:25 AM
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Hi Erin,
I had a great time with my cousin, we talked and talked, no card games. She took me to the Dr, as its about 30km away and I was feeling tired. I told him all about feeling sick, and he thinks it might be the cellcept, so he has lowered it by one tablet. Here's hoping it works, I'm sick of feeling icky. I do hope you get up to see Lilli soon Wow that is cheap for a house, and seeing as our dollar is almost up to 90c for one of your dollars its cheap even for here!!!! How are you doing? Kate
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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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I'm baaaaaaaaaaaaaack!
Hi Pat!
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