No fun at all.

February 6, 2008 at 9:59 pm

[COLOR=”DarkOrchid”]Welcome Chris. Took three weeks before a neuro Dx my GBS. Started in my feet and worked its way up to my chest. Had five plasmapheresis Tx which started same day and took ten days to complete. Was put on the build up of Neurontin and have been taking 5600Mg daily for going on four years. Backed off for a month to 900 and willl never do that again. Neurontin is over $2800.00 a month. Thank God for Medicare. My feet are the worst and I still feel paralyzed around my torso. It feels so strong at times it seems to effect my breathing. It is sometimes the worst pain I have ever felt. My average pain is tolerable but I also have Diabetes T1 and it causes me flare ups regularly. My neuro just started me another regimine of pills, Lamictal (Lamotrigine) that I guess is like Neurontin. Then I have Vicodine for breakthrough pain. Can’t drive and I walk with a cane whenever I feel I can get out.

I know what you mean about morning intensities. I get about two to four hours of sleep at a time. I have no control and even fall asleep at my computer. Fatigue is my biggest enemy. A trip to the store can put me down for a day or two. Fifteen minutes of heavy exertion can take a couple of hours to recover. just walking up stairs gets me to breathing heavy.

I’m sure you will find much help here. This forum is the best and people here know what they are talking about. Good luck and take care.[/COLOR]