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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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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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06-30-2009, 12:32 AM
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Hey Erin,
I wish that they could give you the exchanges in a less invasive manner! I don't understand why they have to keep you in the hospital when they do this...But if it's safer for you, so be it... I'm going for my next series of exchanges tomorrow...Maybe I'll ask my nurse about this....I find it odd...I think you'd definately get a better response from it if it weren't being done in such a scary way! Anyway, hopefully I will get some answers for you tomorrow...I hope that when you get it done that it'll be less scary and will give you the boost you so need right now! P.S. I will pray for you!  Nicky |
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06-30-2009, 12:10 PM
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Just letting you know I am thinking about you today, hope is all going well
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06-30-2009, 12:37 PM
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Junior Member
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Will be praying that all goes well and that God will give you peace of mind.
Shannon His Grace is Sufficient
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06-30-2009, 10:28 PM
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Junior Member
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Erin, I have not checked in on the site for a few days. I am very sorry. Of course I am praying that all goes well for you today and after. God be with you my friend.
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