Broken_Shell Posted March 5, 2010 Report Share Posted March 5, 2010 Erika, (I am having someone else type this post because the pain in my arms is severe). I just wanted to check in on you and find out how you were doing. Please know that I am keeping you in my prayers, and I hope the new neurologist can figure out what is happening. I am sure that they have ruled it out, but I just want to make sure that you have been checked for myasthenia gravis. Hang in there, and remember that your "forum family" cares about you. Broken Shell Quote Link to comment Share on other sites More sharing options...
erikainorlando Posted March 6, 2010 Author Report Share Posted March 6, 2010 Hey Guys...I am so tired of all of this. I am very ill. I can't stand without falling. Any activity, even of speaking with the doctor today left me ill with my o2 down to 92 for a while. I had a friend take me to ORMC in Orlando. They did a spinal. Now they said that the protein wasn't elevated but they are going to look for pandysautonomia...apparentlly it is a different test of the CSF. They did a EMG...said the results are terrible but we have to try to figure out what is terrible...I have had signigicant nerve damamge from GBS so what is new and what isn't. I am scared from the spasm I had the other night. My mom is angry with me...says I am demanding too much of her time and she has other obligations. I wonoder if she would just like to push me out into the middle of the road and a truck could hit me and this would all be over. I am so happy to have you all. I also think this neurologist is trying. I personally would just start IVIG and go from there but he is probably going to send me to Shands...or Mayo. I want to be home with my kids. It wasn't perfect but I had a least learned what I could do and couldn't. I would rest, do stuff, rest, do stuff...I also have horrible sensations after I try any activity....I can't explain the sensation. Does anyone else get this? It goes away when I stop moving and rest....rest....rest...I will write more tomorrow. Thank you all so much. Lieze - I am going to call the chaplin...power of prayer. I believe. What a great girl you are for suggesting it. I love you all,Erika Quote Link to comment Share on other sites More sharing options...
kayjay Posted March 6, 2010 Report Share Posted March 6, 2010 Praying hard for you. I know you need answers and help. Hang in there! keep us posted when you can! Quote Link to comment Share on other sites More sharing options...
dsdmom Posted March 6, 2010 Report Share Posted March 6, 2010 ErickaSomeone just mentioned something that I meant to as well - have they tested you for myasthenia gravis? Quote Link to comment Share on other sites More sharing options...
Maxine Posted March 6, 2010 Report Share Posted March 6, 2010 Ericka, I'm praying for you, and hoping they can help you right away with this. They need to figure this out! I wish I could be there to advocate for you, as I know how difficult it is to do that when you're weak and vulnerable. Keep us updated when you are able. I wish you had more support there!HUGS,Maxine :0) Quote Link to comment Share on other sites More sharing options...
erikainorlando Posted March 9, 2010 Author Report Share Posted March 9, 2010 Hi All!!So I think they are all now in agreement to try to do a hospital to hospital transfer to Vanderbilt. All labs are still pending but I think they know i should be somewhere like that...I will keep you posted...need to start a new thread of my emotional non-well-being-------------------Love you all!!!Erika Quote Link to comment Share on other sites More sharing options...
Noreen Posted March 9, 2010 Report Share Posted March 9, 2010 Erika-Prayers for a speedy and uneventful transfer to the place and the people that are best able to help you.Gentle hugs,Noreen Quote Link to comment Share on other sites More sharing options...
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