I’m ready to tell MY story.

    • Anonymous
      March 7, 2008 at 1:04 pm

      Let me tell you a liitle about ME prior to GBS. I was a 22 yr old fun loving person. Loved to have friends over for dinner(Iove to cook) going to clubs (LOVE to dance). At that time had a 4yr old. We had gotten into 4wheeeling through the woods on trails to pick blackberries and go to the park. Well my life changed one day. Being as active as I was I started to notice something was off. My energy. I remember having a conversation with my older cousin. I just didn’t feel like “myself” (we still talk about this conversation it was like foreshadowing) Well as days went by felt more tired. Then my big toe on my right foot felt tingly kinda numb. This was weird to me but did’nt really set off any alarm. Well the next day I noticed the numbness had moved up my feet and into my mouth(so numb like novacaine) I noticed trouble going up stairs. Dec 2 2007 went to the emergency room. They ran the normal urine test and all that. sent me home. Woke up the next day more weak more numb and now this horrible pain in my back. Went to the emergency room agian samething No help at all. By this next day I could not support myself to make it up stairs could not stand the horrible pain that now seemed to be everywhere. The only reilef was a hot bath. If I was not in the tub i was in complete agony. Went to the doctor again…….now by this time I’m frustrated because the doctors are just outing me like nothing is going on. They would ask me where the pain was …….my answer would be all over well I later learned this is a tell tell sign of somebody jus wanting drugs. They don’t specify points of pain it ‘s oh I’m hurting everywhere. I was sent home for the 3rd time. The next day even worse by now could’nt hold my bladder and was pucking constantly. It was absolute HELL. That night I was up trying to self medicate by staying in he tub and taking percocet givin by a friend.I called my aunt at about 4 that morning to take me back to the doctor. this time seeing the state i was in was pu on IV givin Mri catscan. And not until I brokedown and cursed the doctors was givin pain medication. They really let me suffer way too long. Ok so mri and everything is clean. I ‘m told to see a neruologist who just gives me a shot in the butt and tells me I need to go back to the doctor. So I do ther I’m seen by another neurologist who gives me an emg and conduction test. He tells me You have gullian barre syndrome. Well keep in mind while being sent home over and over again I was looking on the internet to try and figure out what was wrong with me. I was so scared because whatver was attacking me was moving very fast. I knew precious time was wasted during those days. So I had diagnosed myself with ms. I jus knew I had it. All the while I told god I would fight as hard as I had to I would go thion center. rough this challenge,but please no matter how long it takes let me get better.So when the doctor told me gbs which I had a clue what that was because in the midst of this my sister was dating a man named Trevor who was studying to be a doctor and was my little angel. He researched for days and knew what I had from another state. That what promted the neurologist to do the test. I knew it could spread to my lungs, I knew i could die and I knew I could get better. So the fight began! It got so bad(which they tell u it will get worse before u improve) I could not lift my head off the pillow. Locked in my own body. I began to resent my BODY for turning on me. How could this just happen. Depression setin. I was on neuroscience floor for 2 weeks then transfered to Joan Glancy rehab.

    • Anonymous
      March 7, 2008 at 3:14 pm

      Thank you so much for sharing your story with us. Sometimes it is hard to speak about it, but often helps so much when you are able to discuss with others who know what you went through (it took me many many years to talk about my experience- I was 19 when I left hospital.)

    • Anonymous
      March 12, 2008 at 7:47 am

      Are you doing better, now?

      I’m doing the CIDP battle thing, runinhg out of options. But Have Faith and know you are cared about;-) Ypu’ll prevail, just take it a stumble at a time, lol


    • Anonymous
      March 12, 2008 at 2:20 pm

      Hi j, it’s nice to meet you and welcome to our family. I hope that you are doing better. Take care and let me know if I can ever do anything.