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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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#1 | |||
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Senior Member
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Hello all! 2 more days of IV IG and then they pull the PICC line! YAY! I've had it in for 5 months now, so it feels natural having it in, but I will not miss going in weekly to have it flushed! You know you've been to the hosp when the entire staff - including the parking guy- knows you by name! LOL!
![]() It will be so nice to be able to swim! To go out in public and not have people stare @ my line! At first, I thought it was b/c I was looking particularly "fetching", but, alas it was my line! Talk about a deflated ego! ![]() I've lost 5 lbs recently.....yippee! ![]() ![]() Now I just have to get ready for my stepdaughter's graduation party this Friday - the day my line is pulled! ![]() Hopefully I'll be able to stay @ 20 mgs of pred! I'm keeping my fingers crossed! I hope this post finds all of you stronger and happy! Big hugs! Erin ![]()
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Erin . |
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"Thanks for this!" says: | mrsD (06-04-2009) |
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#2 | |||
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Member
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Oh wow Erin, how wonderful will that be for you????!!!!
Well done on losing the weight, how did you manage that, any tips?? I'm still trying. I see my neuro next Friday, but I don't think we will drop my pred down from 15mg, as this is always the tipping point, oh well.
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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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#3 | ||
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Great news Erin, bravo on the weight loss!
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#4 | ||
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Junior Member
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what a great week so far,got my fingers crossed for you! i've had some thyroid issues the past 2 wks,gained 10 lbs in 3 wks[no reason] super low temp -i'm98.6 always but i was cold and checked temp -it was 96.2. kept checking for 6 days,lost voice, sore lower neck,all indicative of thyroiditis which i've had 3 times now in 3 yrs! drs both said most people only ever get it once! aren't i special!! started on 20mg bid of pred, lost 4 lbs in 1 wk now. very good thing-and now can talk!!they loved it when my voice was gone! can life get anymore exciting?? i read a few things i'll share-i'm ever the optimist set your worries aside for awhile-noone will miss them hit a bump in the road don't worry it will soon be behind you not in front hope everybody has as good a w/e as they can and gets out to enjoy some part of it!!!!
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#5 | ||
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Hey Erin,
That's so good to hear! The weight will continue to go down little by little. You'll be back to your old self in no time. ![]() Hugs, Pat |
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#6 | |||
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Senior Member
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I tell you I'm gonna do a nekkid' jig this Friday! It is going to be awesome!
![]() As for the weight loss, I just haven't been hungry @ all. I make myself eat, but I think that the Imuran is an appetite suppressant! I've also been walking a bunch more recently. When I'm stronger I get on my treadmill and try and walk 1 mile or soooooooo..... I've heard that 15 is somehow the "magic" number - with Pred - either you do really well or crash - I crashed and had to go back up to 60 within a week - yuck! I am so glad you are back from your aunties! I have MISSED you! Erin Quote:
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Erin . |
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#7 | |||
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Senior Member
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![]() Can't wait to hear from you! Erin
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Erin . |
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#8 | |||
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Senior Member
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Wow! You've had an exciting time! Isn't it CRAZY what we go through? Life is never dull...that's for sure!
My hubby and son would love it if I lost my voice! Love it! ![]() How are you feeling on the pred? I have a love/hate relationship with it! My neuro told me I'll prolly always be on it, but hopefully, hopefully down to 20 mgs every other day........keeping my fingers crossed! How are you doing? Are you feeling better? Erin ![]() Quote:
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Erin . |
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#9 | |||
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Senior Member
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Hey Pat! You are so sweet! THank you so much for the kind words! I'd rather be heavy and healthy than thin and feel awful again.....any day!
![]() How are you doing? Are you feeling better? Big hugs! Erin ![]()
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Erin . |
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#10 | ||
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Member
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Hi Erin,
I am feeling better, thank you for asking. It was a rough few days, but I'm back. I would have been back sooner, but as you know I don't tolerate the mestinon well at all, so I just had to rest. I'm much stronger now! ![]() Hugs, Pat |
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