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| Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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11-14-2008, 01:39 PM
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Hello all! Just got back from my neuro. He increased my pred back to 20 a day and reduced my cellcept to 1000 mgs.
He also wants to put me back in the hospital for 5 days of IV IG, cuz' I have felt ROUGH recently! GRanted, I will only be in as an outpatient basis - no overnight stays for me - but I still really don't want to go back (hello needle phobia) - at least it's not the other!!!! Yuck!!! He also wants me in @ 3 every day so he can check on me daily - I love that man! He acts gruff and grouchy, but he does have a heart of gold. He also said that I am doing much better than his other MG patients, b/c I have only been in for 1 official crisis and he still believes my chance of remission is pretty good!!! I had "wonky" eye last night - does anyone else experience that? It's where your eye goes waaaaaaaaaaay off center and hurts like the dickens! I had a hard time swallowing last night, but after I was able to choke down my mestinon (the big boy- 180 mgs), felt much better........... We'll be treating my pneumonia via IV in the hospital as well, b/c my neuro told me I will not feel better until that goes away - duh!!!! All in all I guess I should feel lucky that I do have ins and am able to have IV IG, but that PICC line really hurts going in  ................On the positive side, once I've had my IV IG, I should be able to go on that cruise to Jamaica - I'll keep my fingers crossed! How is everyone feeling today? I hope that everyone is having a great day! Alan - how is your visit going with your daughter? I am so happy for you! Kathy (scot's cat) - I can't wait to hear from you! Kate - I'll pm you later! Kathy - I hope you are doing OK! Brian - I hope you are doing OK as well! Missy - are your renovations done? I can't wait to hear from all of you!  Erin
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Erin . |
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11-15-2008, 01:28 PM
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Hey Erin,
It is great you will not have to stay overnight! I hope everything goes well. Did it help you for very long when you had the IVIG done before? Everything is ok here. The past couple of days has been slow. I helped my mom clean someones house Wednesday, and I'm still tired from it. I'm thankful it hasn't gotten worse, it was just kinda aggrevating she was running circles around me. She is such a great support everyday though! Jamaica is going to be awesome! Not sure about San Antonio, but here it's getting CHILLY!! Hope you are doing well today! Kristy |
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11-15-2008, 02:17 PM
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Yeah. I am very happy about not having to stay overnight - the hospital creeps me out!!!!
The last time I had IV IG was @ the end of July/beginning of August, so it did really help (I also had 5 straight days of plasmaphoresis before that in the same hospital stay)........I was worn out after all of that, but am thankful it lasted as long as it did!  I am so glad to hear things are better for you! Just try not to wear yourself out or run yourself down! I know it's really, really hard to just sit and relax, but when you are tired, really try and make yourself do it!I am not looking forward to my PICC line - in fact, I'm TERRIFIED, but I have to do it so I can take care of my fellas! My son and hubby have been sogreat this weekend! My baby (who is 16) has been relaxing with me on the sofa watching TV with me and playing games - he is so sweet! I think he realizes how scared I am and is tryong to calm me down......... Where are you? San Antonio has definitely gotten cooler - in fact tonight it will get down to 33 degrees! I love the cooler weather! If I felt better, I'd go for a walk- -it is just so beautiful here!!!!! Thank you for checking in!!!!! ErinQuote:
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11-15-2008, 04:01 PM
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That stinks about the PICC line, but you are going to feel so much better.
 When is it by the way?I'm in the DFW area. Last night a cold front came in and the north wind it brought along has a BITE! I love cool weather! Tonights going to be hot chocolate night  Just relax this weekend and take care of yourself! Kristy Quote:
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11-15-2008, 04:12 PM
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I start on Monday!
My neuro wants me in a little early so they can start the PICC line............My grandparents live in the DFW area, too! They live in a little town named Terrell! I love it there! It is so pretty! I'd move there if my hubby had his real estate connections there! It will be great to feel good again! I have been so tired lately! My hubby and son have been great, but I do feel guilty about not taking care of them more! Oh well! Next week will be great! Plus, once you've had IV IG, it looks like you've had an eye job (bonus)!!!! What does your doc say about you? Are you on any meds yet? How are you doing? I know a lot of people hate steroids, but for me they have been a real life saver! I'll take weight gain, moon face, mood swings and sideburns to be able to breathe, eat, walk again! Take care! Erin
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11-15-2008, 08:14 PM
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Junior Member
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Kristy,
I'm in the DFW area as well. Can you be a little more specific? PM me if you'd rather. Missy |
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Back to the hospitalfor more IV IG!
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