thanks Gene…I have to remember that it has been short time in the grander scheme of things. Fortunately I am able to rest as much as I need to and do so. Heck I am even able to not feel guilty about it now…whew!

hugs and love to all

Hi Racer

thanks for your concern….I have been into natural remedies for a long time and always research everything before even considering putting it into my body. I cant even take excedrine with caffeine now or I will literally come out of my skin, no soda, no coffee, no atifical stimulants either. I researched the ingredients to make sure there wasnt anything stimulating because I absolutely hate being overstimulated these days. Sad as it is, even a good conversation can send me sky high and leave me tingling and feeling weak again.
The supplements may not heal me, but at this point even feeling better is a huge thing. I have been feeling well enough to think I can go for broke on the house cleaning…catching up on the past month and a half:o. But I know healing and recovery will be slow so I try and do what I feel I can and rest rest rest. How do you get over feeling lazy???

thank you Jerimy. I have noticed the same pattern for myself. Some mornings are tougher than others especially if I try and do too much the night before (like last night). Right now I am feeling weak but not quite as bad as earlier.

My mantra has been “Guillain Barre go away!” when I meditate I repeat ” get out of my body get out of my soul, you are not welcome here! Only God and Good things belong here”. Ive noticed I even wake up during the night and say these things.

I will be on the phone with neuro monday morning, hopefully I can get in quickly since I have called so often recently and they are familiar with what is going on.

God bless and good things to you
Lori

Thank you Barb. All of this info really helps!! I have a billion and one questions..posted in my other threads.

Not sure if anyone saw my original thread that I added to, but I plan on writing something regarding RL cases and problems…as well as triumphs…of GBS. I have come to beleive that the medical community is clueless about this. Did you know a medical university did a study on patients with GBS (mild cases) and 7 out of 10 of the patients were negative with a spinal tap?? 7 out of 10! I was very surprised.

All information about this is important, very important. Others need to know, doctors need to know.

having had experience in that particular area in the past…I am sorry you had to go thru that on top of everything else. BUT am also glad you are better now.

May I ask, what treatment you had for GBS and what you experienced? I have read about scary things happening with PP and IVIG and am not exactly looking forward to any of it if that is what I have to have done.

thanks
Lori

Thanks Alison

the reason I am asking so many questions is for a couple of reasons really…

One, of course, to learn all I can about this because I am not accepting what the doctor told me and need all the info I can get to approach other doctors and demand someone listen to me.

and two, I am seriously considering writing a very long article containing facts, case histories (minus names unless someone was okay with a first name being used), and other information and posting it on the net and trying to get it published in a medical journal of some sort. To educate doctors that they need to realize not all cases of such things (GBS and otherwise) present themselves the way thier textbooks taught them. I also want other people to be armed with knowledge in order to approach doctors, to know what is involved (worst case scenarios, best case, etc), and know there is hope in spite of the fear.

I am starting week 4…I have been doing a lot of thinking lately and realized that this all started before my hubby left for a business trip on the 12th of july. I remember feeling the tingling in my toes before that and the week before my son and I went to a mall and I recall my right foot and leg feeling really odd along with tingling and numbness (thought I had sat wierd in the car for the short trip). And it went from there. I have had no paralysis (knock on wood) except for feeling as if my body wouldnt respond if I tried to move and arms and legs feeling way too heavy. I have also noticed if i get over stimulated I feel much worse and have a spacey-out-in-left-field feeling, get very “buzzy” in my legs (mainly my lower legs and feet), my lower arms, and my face and neck (the tight turtleneck feeling…maybe not quite turtleneck, but a high crew neck). If I take a B complex, a benedryl, and grab an ice pack and a wet towel and lay down I start feeling better. Less buzzing and it is just tingly. The “crewneck” thing freaks me out, but I can swallow and talk and all that. Ate my first soild food tonight! I havent eaten in about 2 weeks, lost 10 pounds, and am sick of Nutrition shakes but it is all I have been able to “eat” because I have had absolutely NO appetite.

I am praying hard this has reached its peak. I will be making more phone calls tomorrow and have my hubby ready to head back to the hospital at a moments notice. He and I have decided to head over to a walk in clinic that i talked to Friday (only person so far who has listened to me and seemed concerned) and see if I can get an immediate referral to a neuro. I know if they do a nerve test they will see that there is something wrong even without another spinal. The other neuro said if that test showed a problem they would start the PP. I sure as hell hope there is no reaction if I have to go thru that. I want and need to start recovery from whatever is going on. I can not accept “anxiety” as a diagnosis since it has progressed the way it has. I want to help educate people with what I learn and hopefully educate doctors as well. I greatly appreciate everyones input and help. Thank you!

Still praying for myself and everyone here
Lori

questions…to add to my others posted above…

did everyone here experience paralysis?

How far did yours progress before you felt it hit a peak? I have read that this usually reaches some sort of peak after approximately 4 weeks. Have others experienced this?

I know each case is different but I’d like to know if there are others who have had GBS and only got “so bad” meaning they didnt experience paralysis, vents, etc.

What is considered “mild” “moderate” “severe”? And when did you start feeling even remotely better?