I Was 17, One Year Ago, When Gbs Hit.

The morning after my senior prom, Sunday May 18 2008, I woke up to the flu and shooting pains in my legs. My mom thought I had just danced too much the previous night so she made me walk it out. However, it was so painful I was crying as I had to wrap my arms around my best friend's neck. We finally got all the knots out within about 15 minutes. The next 5 days I was sick as a dog! I had the common symptoms of the flu. Starting that Thursday I got tingling in my toes. It felt as if they were asleep and would not Wake up. But then it shot straight up to my fingers and I started to become extremely weak. On Saturday, May 24, 2008, I fell asleep around noon and my mom could not wake up. The next thing I know, I am in the back of some ambulance being injected with an IV and this man is telling me everything will be alright. I freaked out and passed out once more. I finally awoke in the hospital so find that I had mono. I thought "mono makes you weak?". I continued to tell the Dr that I was loosing feeling and he told me it was common. I had to get wheeled out of the hospital by my parents. I was a scared 17 year old. On Wednesday, May 28, 2008 [just ONE DAY shy of my high school graduation]  I could not even get off the couch...in order to just use the bathroom, my mom would have to practically carry me. I collapsed on the floor on the way walking back to the couch and my mom picked me up and threw me into the car. We drove to a different hospital and I was immediately taken to the ER. When the Dr walked in, it was the SAME DR FROM BEFORE! Crazy, huh? So he says, "hey! mono girl. not feeling any better?! :( " I was pretty angry because I did not think he was taking me serious. About an hour later, my mom walks back in with this awfully angry look upon her face. The Dr who says I had mono was talking to another ER Dr and called me an "over dramatic teenager". So she leaves my  room again. She comes back in with another Dr who tells me that my symptoms sounded like guillain barre. I look at her and asked what in the world that was. She briefly explains it to me. About 15 mins later she was giving me a spinal tap. Once the results came back that I had GBS, she made me breath through this weird thing and it read how much Oxygen I was getting. She said my lips should be blue. By midnight, I was paralyzed from my feet up to my mid stomach and from my fingertips up to my shoulders. I also got affected on the right side of my face. 75% of my lungs were not functioning so they gave me Oxygen right away. And by 4 I had a room in the ICU and was getting injected with IVIG [blood transfusion that is supposed to help stop the paralysis]. I spent 3 weeks in ICU and then another 3 weeks in the hospital. I had Physical therapy & OT three to four times a day. When I left the hospital I was still in a wheel chair. I learned a lot from home though. I was able to walk with a walker for short distances though. I was taken to PT and OT three times a week for 6 months after the hospital. I had my first relapse July 28, two days before my 18Th birthday. They said I had a mild seizure and they gave me some medicine to take home for the twitching and shaking. I did, however, go off to university that August. I was able to drive myself to the hospital for therapy. While living in the dorm, 45 minutes away from my home, I had a seizure in my room. Luckily, my roommate knew everything and what to do so she called my sister who happened to be in town. She rushed me to the hospital and they ordered me to not live in the dorm anymore. So I commuted. I did give a speech about it at my old  university and hospital because I am still the only person in about 60 miles to get it nearly as bad as I did [which was not that bad] since 2007. It has been a year and a half about since GBS first hit. I was a runner while I was in high school. I would run 10 miles every other day 7 miles the other days. The last day I ran was prom morning, May 17, 2008. I have been going crazy. I pushed myself a ran a mile this r past Saturday, October 10, 2009. My mom cried with how happy she was. ha ha. Those mothers! But it was very hard and my feet tingled very badly that night. So now I am starting slowly. I have been power walking with my mom every other night to get my leg strength back. I also bowl 4 times a week to work on my arm strength [and because it's fun :) ]  I love doing activities, and have not allowed GBS or fear to hold me back from anything. I live at home now and go to the community college because it is much easier on driving, simply. But I would not have been able to push myself like I did if it was not for my family and boyfriend's support. They were my rock. But GBS should be known about, but never feared. It is a crazy thing that has potential to hit anyone, but will not affect many. It's very rare.

thatonechica thatonechica
18-21, F
2 Responses Oct 17, 2009

Check my blog for our Guillaine-Barre stories, pics, info, etc. Go to www.rusticramblings.wordpress.com. Choose the category Guillain-Barre Syndrome/hospitals. Scroll down (back) to the first entries. I believe the very first one is "Living in Hospitals, Part I". More recent stories in other categories mention how the GBS survivor is recovering now, although they are not linked to that category. Every GBS survivor is different. This is just one example. Life is good!

Your story is so similar to mine. Congrats on getting back on your feet and making it through. I know it's not easy. I am now 29yrs old but I went into the hospital 6 weeks before my 18th birthday have 6 tratents of IVIG, started getting better then 1 day before my 18th bday I relapsed bad. Breathing machines, feeding tubes you know the drill. I was in ICU for 10 weeks. I finally left the hospital also still in a wheelchair and after 3 1/2 months in the hospital. It was a good 6months before I could walk on my own. I missed my first year of college and everything my friends were doing. It was the hardest year ever. I am so happy to hear you jsut ran. Take it slow. I am 11 years out on this thing and there are still some days I work out and my feet go numb for hours. It freaks me out. It's the worst feeling ever and such a ahard feeling to describe to others. Anyways thanks for sharing your story, I feel like no one gets it even though its been so long I live with it everyday.<br />
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Lisa