Discussions By Condition: Nerve conditions

Gillian Barre? Please advice

Posted In: Nerve conditions 5 Replies
  • Posted By: coralann
  • December 1, 2007
  • 07:39 PM

Hi everyone.

My problems started back in June. I had a nasty dose of Camperloacter poisoning and was ill for three weeks. Three weeks after that I after feeling quite well I had a nasty evening of diareha which soon stopped but then tingling in both my hands and arms up to the elbow and the sme in my legs and feet up to my knees. I went along to my surgery a number of times befare my GP finally took the step of refering me to a Neurogist. The appointment came through and was for 6 weeks time! While i was awaiting the appointment my symptoms became worse. The tingling became louder(like holding a chainsaw!) and was accompanied by strange numb feelings and crawling sensations, but the worse feeling of all was the fatigue, a feeling of absolute exhauston that i have never felt before. I couldn't move to do anything (very difficult with three kids and no family), was faint and dizzy all the time and can only describe the feeling as a feeling like i was disolving. My symptoms stayed this way and then slowly improved over the next four weeks. I never lost the use of any of my limbs. My breathing was affected slightly with heart pulpatations and a feeling that i actively had to make my chest take the breath in. I also had a funny sensation in my throat that over days spread down to my chest before disappearing. I realize that compared to some if not most i have been lucky.
So my appointment with the neurologist arrives, he tests all my responses takes history and tells me i have mild Guillian Barre and what it is. At this point in the illness i'm feeling quite well, some tiredness but really nothing more. The Neurologist decides he doesn't need to see me again and that's that! Well great i'm lucky, shocked but lucky and i'm on my way up i think, that is until the end of the week when all the symptoms come back!

Since then i have never been totally free of the symptoms most days i 'disolve' the sensations are now in my upper arms also and extent upto my buttocks where my legs are concerned. I feel 'ill' everyday and even though i have tried to seek help from my GP all he has done is tell me it will take a long time to get over and has told me it is a virus....which it isn't! How am i supposed to have any faith in him treating me if he doesn't understand what i have wrong with me? I also keep getting bouts of diarrehea and all he has done is given my anti depressants, which i don't need and won't take. Do i keep getting these upsets because my immunity cannot get ride of other illnesses because it is so haywire?

I would appreciate any help and advice anyone has. It has now been 6months since the foodpoisoning without improving considering i have GBS mild. I just feel so down and low. im finding it hard to cope, have had to give up work and uni and feel i have no purpose anymore

Thanks in advance

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5 Replies:

  • My sister is in ICU in Orlando because of Guillain-Barre syndrome. She had pain and weakness in her feet and legs for weeks. Then all of a sudden her right arm lost all muscle control, then two days later the left arm went. She was admitted and put in ICU June 23rd. She is still in ICU undergoing both known treatments and is on life-support because it has affected the breathing muscles. Change doctors!
    Anonymous 42789 Replies Flag this Response
  • I am having numbness in both feet and sometimes in both legs, severe fatique, and muscle pain,, balance problems, its almost like i am drunk, I dont understand what is going on with me, I have went thru a battery of test ranging from MRI, EMG, ect, with the drs telling me could be MS but not sure, I was always very active until about a yr ago , I passed out at work and was checked into the Hospital for 3 days again more test. severe stress becasue I Dont understand and How do I tell my husband and my 2 grown daughters what is wrong, all they hear is that I'm in pain and very tired. But most of all I have 2 presious grandbabies that I can only spend so much time with them before my body just tells me its time to lay down. I cry alot. its depression and I take meds for it, I alos take Lyrica 100mg 3 times per day, I have good and Bad days. Need advice??
    Anonymous 42789 Replies
    • November 29, 2008
    • 06:05 PM
    • 0
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  • @lewis1289Your symptoms are likely neurologic. I cannot figure out if it is a central or peripheral disease but it seems to me its peripheral. You did not tell how long you have them but they seem over a year.I could say very few things:It could be some form of neuropathy --> E.N.G. is quite sensitive in this direction.There is also a semi-neurologic poorly understood disease called "Chronic fatigue syndrome". You need to be examined by an experienced doctor through a protocol.
    tsoukase 18 Replies
    • December 1, 2008
    • 10:07 PM
    • 0
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  • Hi I', Brandi. I had GB in 1998. I was 21 years old, and a mother of 3. I didn't knwo how close to death I was until after it was all said and done. The doctors said I had the flu and sent me home. Within 3 days I could no longer walk, crawl, talk, hold a pen, push the covers off of me or sign my name so my mom could be my power of attorney! Very scary! And just being 21 was even more frustrating cause I was used to doing everything myself. It taught me a new value for life, and not to take anything for granted. Of course today, I still have some bodily fucntions that didn't come back correctly. Only thing sme and my mom noticed that others wouldn't if you didn't know me before. I'm glad to say, out of all mucles, my lungs stayed the strongest of them all, and I never had to go on a breathing machine! To all who have had or just now experiencing this syndrome, please note YOU WILL GET BETTER!!! Keep POSITIVE people surrounded by you AT ALL TIMES!! I had my mom bring in a cd palyer with head phones and listen to all my faviorte music. And that helped A LOT! PLEASE KEEP YOUR HEADS UP, IF NOT FOR YOURSELF BUT FOR YOUR CHILDRENA AND FAMILY!!! You're all in this together. My mom NEVER left the hosptial or rehab center. They just gave her 2 chairs ans a blaket. My sister instanly gained 3 more children in assitin to her 1. I am forever grateful to my family who helped me through one of the most difficult times in my life! I know it hurts and it's painful!1 Try to have the NP turn you over so you won't get bedsoars. I didn't try any new treatments the doctors wanted me to do. I left everything in Jehovah's hands. I didn't want to leave the hospital with more than what I came in with!
    Anonymous 42789 Replies
    • December 9, 2008
    • 03:27 AM
    • 0
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  • I had Guillian Barre in 1989, I was 15. I had the worst headache for about a week. I was taking so much advil my pee was orange. Then I started throwing up everything -even water. I went to the GP he said eat popsickles and pepto bismol. I threw that up for days. I became very week. I started to feel tingling in my fingers then my toes, then it worked its way up my whole body. My back hurt so bad. The dr was still telling me I had the flu. I went to a chiropractor because of the back pain. She adjusted me -I felt better but a few days later when I came back and could barely stand she would not see me. She suggested I see a neurologist. So I called my GP and he said the neurologist can't do anything for you that I can't. I went anyway. He tested my reflexes asked me a few questions and admitted me into the hospital to have a spial tap to confirm the Guillian barre diagnosis. I became increasingly worse. I was then transfed to ICU where they put me on plasma florisis. That helped me recover faster. I was a guinene pig to them. I went from a normal 15 yo =115 lb. to about 49 lb. I had no reflexes or muscle tone whatsoever. After 7 hours a day for 7 days on the plasma florisis machine- it took out my plasma and substituted it for sugar water. The virus is said to be carried in your plasma. This filtered it out of my system faster. I went to 6 months worth of physical therapy. I fully recovered. I spent a total of 21 days in the hospital. Now almost 20 years later....I recently got Bells palsy. I was a mild case but information says that they can be related.Guillian Barre is said to start from an autoimmune problem....or a minor surgery. I had an abortion, sad to say, 6 weeks prior to coming down with GBS. So I think that is what brought it on.
    dana911 16 Replies
    • December 15, 2008
    • 04:34 AM
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