Gillian Berea Syndrome LING

Hey everyone ! Hope everyone is doing good. I was writing to see if anyone has even heard of this, Had this syndrome or know someone who has. I was diagnosed Eith this In dec. 2004. I had my Gastric Bypass August 24,2004 also. I done GREAT. I felt great , but I started have problems eating and drinking and in pain all the time in my chest,shoulder stomach. I was terrifying. I had no idea what was going on. After about 10 visits within 2 weeks at the ER they finally did a ultra sound. My gallbladder was full of stones. Oh and I was also dehydrated the whole intire time.SO they got things ready for surgery. I had my surgeon that did my GBS Do my gallblader. I went to see him that friday. I was in so much pain they couldnt find a blood pressure  so They told my mom to take me to ER. I was admitted right away and picked and probed. i was so glad when they brought pain meds. They gave me morphine and I almost scratched my face,arms,leegs,feet off. I was itching so bad.So they changed it to Dilaudid(SP?)It helped somewhat. Well Monday finally came and I had surgery. I was hurting alot so I stayed over night. Dr. Naziri was so nice. He told me if I felt I needed to I could. I love that man.On tuesday My mom came to get me and while they were getting paper work together and signing all the stuff I told the nurse I couldnt really focus on her and I was embarred because I felt like I looked weird. I also felt numb and had tingling. I was weak but thats just what happenes after surgery. I moved from jacksonville,NC(husband in USMC)I was staying with my parents so they could help with my son , my husband was working and working and came any time he could.When I got home i walked up to steps went in and sat in my recliner.I was still feeling very weird. I knew something wasnt right. I went to get up to go to bathroom and fell flat of my face. I got up with help and went on to bath room. I called doctor and he said take benadryll , it was probally all b/c of all the pain meds I was on the past weekend. So I did. I took 2 bottles and nothing got better. I finally got to the point I couldnt even get up and move my arms or legs. I could feel anything below my neck. My face was very numb. When I laid down I felt that I couldn't breath.(I found our that was a serious problem)I waited 2 more weeks and started the benadryll again. Finally I found a Doc in Wilmington and got a appt. The nurse was a WITCH! SHe told me I needed to get up on the table, I said"I cant" she was like well you are gonna have to try. WOAH!!!!!!!! I was feeling the devil in me by that time so I hollard I CANNOT WALK< WHAT DO YOU NOT UNDERSTAND.  My uncle and aunt were there with me and my mom. They heard me scream and came in. and Do you know they put me on the table and that WITCH did not even offer to help!!!!Well the doc said go to the ER. SO I said take to to Camp lejune naval hospital. I had a spinal tap and was admitted to ICU. The next morning a neurologist come and do test. He shocked me with these things. Called NERVE conduction . He said YOU HAVE  Gillian Berea Syndrome. I had no idea what that was. I was just scared. I was very close to being put on a ventilator.(thats what was so serious about laying down and not being able to breath was all about.) I was given IVIG immuneagoblin(SP?)another persons anti-bodies. I was scared b/c I had to sign a paper about getting aids and all that legall stuff. I was so scared and had no idea if I would make it.My feet was burning so bad. They honestly felt like I was standing in the PITS OF HELL! OH ya and that witch nurse found out I was really serious and she called my husbands cell phone to check on me. I still go to that doctor and shes still a Witch but shes sooooooo nice it makes you sick also. I guess she fells stupid. LOL After 2 weeks there in icu I was moved and I had Christmas in my hospital room. I was then transported to NEwhanover in Wilmington ,NC.I was in-patient at a Great place Coastal Rehab. I was in so much pain I couldnt wear shoes and couldnt feed myself,shower or anything by myself. I was pretty much worthless,or so I felt.The therapist were awsome. I was in pain constanly but went 2 times a day for work outs and other thing. They had me walking after 4 weeks. But with a walker and very slow.I feel alot but I was trying. They decided to send me home. I got home and had a therapist come 2 times a week . He was great but I couldnt do the things at home like I could there. I ended up back in a wheelchair back to square one!  I came back to stay at coastal rehab and worked in the pool some and got back to walking again. BUT I was in so much pain and depressed From all the anti_depressants. they stoped them and changed them and stoped again . I was a mess. They were giving me blood pressure meds and Soma for muscle spas, That da I had refused the percocet b/c it did not help and made me sleepy. Well Wouldnt you know with bp meds and another med that lowers your bp(soma) I ended up back in ICU. BP got to 50/35 Talk about a scary time! My mom just knew she was gonna loose me. But i knew I had Logan , my son and I was gonna fight. I finally got out of icu and had to learn againsomethings I had acomplished before, like getting up out of a chair,different things with my hands.I got better and started with a caine. But I needed alot more work with strentgh. I was so depressed and In so much pain . On a 1-10 scale my pain level was 1,000,000,000!!!!!!! Terrible. They were giving me tylonol. Can you even imagine that?I screamed in pain all day and night for any kinda help. Finally I got in my wheelchair and said im leaving, call my doctor and get my paperwork ready. I was walking, but slow. My mom had borrowed a bike and treadmill for me to keep working on it. I was so glad to get home to my mama,daddy.husband. and especially my baby logan who was 16 months at the time!!! It really helped my soul.Pain was still there. I laid in my moms bed 14 days crying b/c the doctor had sent me with cymbalta and had no refill. so after almost 2 weeks and no meds i was just sad and out of my mind! The paxil kicked in on the 14th day and everything looked brighter . I now go to pain management and will have to the rest of my life. I have bad nerve damage in my feel. thay still burn terrible but my meds help it alot. My legs are weak but i'm walking again like i used to! I am so sorry this is so look but I wanted to share with others what I went trough. I want you to know it had nothign to do with my GBS. ITs something no one knows how it occurs, *you can get it after a less envasive surgery(i had gallbladder) but also has something to do with bacteria i think. But anyway If you do read this I appreciate it and If you have had this or know someone who has I would love to get to know you and hear your story. I have been wanting to do this for a year now but I finally got the neve to. I cry everytime I talk about it(like right now) but its something thats very rare and I was that lucky person.I have to say its changed my way I look at life . I dont know if you are a christian or not but I want to say I thank God for getting me thrugh this and I know he is the one who did it for me. Its drawn me closer to him. They say things happen for a reason and I know now that they do! Thanks for reading! Lindsey Crosby

Do you mean Guillain Barre' Syndrome ? I had a firend who got that when she was going through Chemo . I guess you usually get it when your immunity is lowered . . Kathy

Do you mean Guillain Barre Syndrome??

Hey,  Sorry about spelling, That is what I ment. I have to papers from hospital and one Doc wrote that spelling and another they way you said. Sorry about that. lol i've been outta school4 yrs and believe it or not sometimes I think its been 50 because of brain farts. lol thanks for spelling it right. , Lindsey GOD BLESS

Hi Lindsey, I just wanted to let you know that I have the chronic form of Gillian Barre Syndrome. I am currently in the process of getting gastric bypass.  The only thing that has worked for me to keep it at bay was prednisone steroids (which has sooooooooo many side effects) and IVIG. I am currently on IVIG every 3 weeks and I am doing awesome with it.  I've had CIDP (chroic inflammatory demylenating polyneuropathy) for 10 years.  Any questions about it.. I can pretty much answer. Take care Charity

Try to find the book "Bed Number Ten".  It is about a woman who suffered from Guillan Barre and how it effected her and her family.  Good book, and it gives you a new perspective on patients who are totally dependent on other people.  It is a true story written by the patient. 

I had an aunt that was diagnosed with this in 1992 just about three weeks after receiving the flu shot. The drs wouldn't say that it caused it definitely, but they did say it could have. She was basically paralyzed from them on and got around on a motorized scooter. She would have to be hospitalized approx 2-3 times or more a yr and undergo phoreasis (sp?). treatments. She had not had any type of surgery prior to being diagnosed w/this. Just the flu shot which by the way, has eggs in it (just in case you know anyone who might be allergic to eggs and want to have the flu shot.)  My aunt stabilized but never regained her ability to walk, etc.  She passed away approx. in 2005.  Sorry to hear about the challenges you've had w/it.  I know it changed her life but yet she was like you and tried to just keep going in spite of it.  Thanks for sharing!!