[livingwith]

I was first sruck with GB 7 years ago and while the intial onset was terrifying as most who have suffered have know. The unexpected flare ups have been worse on me emotionally.
When I first became sick the symptoms puzzled the doctors. I went from diagnoses to diagnoses. The pain and weakness could not be explained for a long time and I became frustrated with my condition. After many attempts at controlling the pain I got into the ritual of being prescribed narcotic based medicine. (Duragesic ...Read the full article

[Paka]

Aloha
I can completely empathize with you. A quick summation of my experience with GBS goes something like this. It was rapid on set from normal to not able to breath in less that 48 hours. On a ventilator in the ICU for 5 weeks, then a trachea and feeding tube for 3 months. My paralysis was from my eye lids to my toes. Walking and talking took almost a year to re-establish. The horrors (tortures) that all though necessary to survive GBS are impossible to convey to others. They administered a drug called Ativan that caused me to have hallucinations, as I was paralyzed it took them to months to figure out that the drug was sending me to la la land almost continuously. I could go on point I know you get the point.
It has been 13 years since my experience yet without the daily intake of a drug cocktail consisting of Tegratol, Neuronten, Baclofin, Oxycontin and 16 to 20 Tylenol my life would be insufferable. I have tried to wean myself off the drugs but I always end up in a very bad place.
That being said I do fully understand were you are, I know it is frustrating and frightening. I don’t normally like to discuss this, just replying to you is causing tears to come to my eyes as memories of my "adventure" come to mind. Your doctors and loved ones I’m sure are sympathetic but I know it is impossible for them to fully grasp the anxiety and fear you are experiencing. They say a full blown event is not very likely, but it wasn't very likely to happen in the first place, right? But I do no that just knowing there are others out there that do understand can help you deal with the isolation? you sometimes feel.
I hope knowing there is a fellow traveler out here gives you some solace. Hang in there things could be worse as we both know.
Much Aloha
Paka
I don’t know if this is allowed by this site but if you would like to contact me directly my email is [moderator note: e-mail address has been removed]