Living with Guillain-Barre Syndrome

I have been fighting Guillain Barre for 10 months now. Just 3 weeks ago is when I found out the diagnosis. The pain started in late February and by the beginning of March I was numb from the waist down. I had no feeling at all for 6 weeks. Then I started to get my feeling back and started walking slowly.

From that point until July I was having good days and bad. I had a relapse in July and ended back in the hospital it was not quite as bad as the first time but bad enough. Still today I have alot of pain in my back and both legs, numbness and weekness in my legs, burning in my feet, I get worn out very quick, and can not do most things I used to.

I have been in the hospital 5 times, seen 8 different doctors and had every test done under the sun. I am still undergoing test to see if I have micro fiber neuropathy on top of Guillain Barre.

I am 24 years old, a wife, and a mother to a two and three year old. I just wanted everyone else out there with the same thing to know that there is one more person that understands. My husband was so great about everything when I couldn’t walk, he took care of the kids, bathed me and dressed me, carried me to that bathroom and anywhere else I needed to go, and continued to work full time to support us. But it is true unless you have gone through it you don’t completely understand what an impact it has on someone’s life and how hard it really is to deal with it.

Trying to stay positive is an understatement, you have to fight every minute of every day to stay on top. I wish there was an easier way to diagnose this syndrome, the things people have to go through and the frustration of every test coming back negative is horrible. After a while its easy to think you are crazy. One day your fine the next your paralized and no one can tell you why.

In my case the doctors did the spinal tap too late and the protiens had already gone down in my spinal fluid and that is why it was never detected. My doctor gave me a time frame of 2 to 10 years before I could possibly be better. Thank you for reading my story.