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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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10-28-2008, 02:09 PM | #1 | |||
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Hello all! Just got back from my neuro. I have feeling really crappy lately and was worried that I'd have to go back for IV IG or the other (yikes).......Anyways, he said that the drop from 20 to 15 affects a lot of people adversely and that he'd like to go ahead and increase my Cellcept to 2000 a day (it was @ 1000) and keep me @ 15 mg of Prednisone for the next week. If I am Ok then GREAT, but if not, then I have to go in for IV IG or the other (my eyelids have been drooping and I've been sleeping A LOT!)........
Please, please keep your fingers crossed for me! Also, please pray for me - I really do not want plasmaphoresis, cuz' then I'd have to stay in the hospital as I can't walk around with a big cath in my jugular! I cannot stand this darn disease! Erin
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Erin . |
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"Thanks for this!" says: | Twinkletoes (10-28-2008) |
10-28-2008, 03:10 PM | #2 | |||
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Thats not fair you have sounded really well and you have been good by resting!!!!!!!!!!!!!!! this has to be a blip
OKAY I'M PUTING YOU IN MY THOUGHTS ........... and they are quite powerful like positive and good. only they have to travel so it may take a little while but you will be okay Alan |
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10-28-2008, 04:44 PM | #3 | |||
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Grand Magnate
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Awwwww, Erin. I'm so sorry.
Sending you some hugs and get-well-wishes.
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Rochelle . . I've lost my mind ... and I don't miss it! LIFE HAS NO REMOTE -- GET UP AND CHANGE IT YOURSELF! |
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10-28-2008, 07:15 PM | #4 | |||
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THank you so much! I really appreciate the hugs and well wishes! I could definitely use some right now!
Erin
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"Thanks for this!" says: | Twinkletoes (10-29-2008) |
10-28-2008, 07:14 PM | #5 | |||
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Hello again! Did you go walking today? Your daughter is due in soon, right? I'll bet you guys have a blast!
This disease does stink, but together we are stronger I always love hearing from you................how are you? If I do have to go in, then at the very least I know I'll be ready, willing and able to take that great cruise to Jamaica at the end of the month....... I'll go cry and feel sorry for myself, but I'll get over by tomorrow! Erin Quote:
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10-28-2008, 06:56 PM | #6 | ||
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erin
i'm so sorry you are in my thoughts and prayers sallyann Quote:
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10-28-2008, 07:11 PM | #7 | |||
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SallyAnn,
THank you so much! I'm a big believer in prayer.....Tonight I'm just going to allow myself to wallow in self pity and then 2morrow get back up and dust myself off! I know it's going to be OK, I just really, really hate needles + I thought I was doing better. How are you doing? Let me know when you have some time! Erin
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10-29-2008, 12:31 PM | #8 | ||
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Hi Erin,
Just wanted to send you some more good wishes! I hope you can figure out your meds - at least they aren't increasing those steriods! I'm stuck at 45 mg every second day and don't feel strong enough yet to reduce them further. Take care of yourself. Relax a bit - It sure sounds like you are working your buns off! Alan - what do you think of this cold snap - sheesh! We had snow yesterday morning! Is it as bad down south where you are? Brrrrrr. ~Kathy |
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10-29-2008, 04:27 PM | #9 | |||
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Hey you going to Jamica that will be great ............
my son James took me to the Bahamas 4 years ago will never forget it was fab!!!!!!!!!! i went walking after the rain stoped i'm still loving it and my Lorna's taking me to see my Mum at the weekend cool. Erin keep those positive thoughts.................. Hi Kathy no no snow but it was very near bet you get lots its far to cold here MG may like it but the rest of my body doesn't Alan |
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10-29-2008, 05:44 PM | #10 | |||
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Hi Kathy! Thank you for the good wishes! I really appreciate them! I loved hearing from you! I cannot wait until my meds have been sorted out.......my neuro wants to increase my steroids GRADUALLY if he does decide to increase them. Maybe 1 mg @ a time - we'll see! I have been able to work recently, though this week I'm going to take it easy! My mom is going to stay the night tonight, so we'll have a girls night! How are you doing?
Talk to you soon! Erin
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