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| Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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06-28-2009, 11:46 PM
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Hello all! I'm going to call my neuro 2morrow to ask about plasma exchange........if you know me @ all, you know how scared I am about it, but I really think I need a BUMP to help me!
 I'd love to have my IV IG again, but I had it for 5 months straight and thought that I would be "good to go"for a while, but I guess it wasn't meant to be...... I'm just so darn upset about this whole thing!  I will be doing great and then *bam* out of no where I get hit with the whole weakness thing or get sick and I'm back @ the hospital........My left eye is always my indicator that things are going downhill - fast! It gets weak and hurts like heck, and then I am weak (again on my left side) - regardless, when my left eye goes wonky, it means that I need something quick! I've already packed my bags, b/c if I have the exchange I have to stay there (hopefully Dr. I will request a private room so Mike or my mom can stay with me - the hosp really scares me) On the positive side, if I DO go in, I'm taking my little portable fridge with me to store my tea, milk and juice - I bet the nurses have never seen that one before  !I really hope he lets me get away with a huge boost in my pred, but I really think I may need to go in for a while and get my oil changed........ Those of you that pray, please do so! I am TERRIFIED about the exchange! It just plain sux! Erin
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Erin . |
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06-29-2009, 01:20 AM
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Quote:
Erin, Praying hard for you my friend! Simon |
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06-29-2009, 06:54 AM
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Hi Erin,
hope all goes well. Thinking of you Honey. love rach xx |
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06-29-2009, 07:47 AM
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Junior Member
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fingers are crossed for you!! you are not the only one with private bar in hosp. i bring my own cooler and use thier ice. just put new ones in when i drink one. at home i always shower before bed which isn't always doable in hosp. so i make sure i get washed and change before bed.it helps since i find it gross to stay in whatever all day and then sleep in them.i hope you get whatever you feel is needed!!!with out too much of fight from drs!
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06-29-2009, 12:15 PM
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I loved getting Plasma Exchange {crazy I know but it helped} My Dr. doesn't want me to do it though
since I can't take the meds I wish he would change his mind about the exchange. Either way remember Erin that you are always in my thoughts, you are a light that shines brightly on this site!
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06-29-2009, 08:33 PM
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Erin
I hope you get feeling better soon, sounds like your you have your warning signs down, & I am sure your Neuro will get things under control for you. Mary
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