Living With Gbs

Three years ago I had GBS.  I had been feeling progressively weak all summer.  I had alot of trouble getting up and down to garden.  I had dizzy spells and generally felt unwell.  I have had migraines for most of my life on a regular basis. In August I had one that was excrutiating.  I was vomitting more than usual and had trouble swallowing. It wouldn't go away.

I began to fall when walking, especially  when changing levels.  Stairs were impossible without help.  My legs just wouldn't respond sometimes.  I went to my family Doctor twice and was told it was stress and I should meditate.  As it progressed, I couldn't get out of a chair and eating was so difficult that all I could eat were instant breakfasts.

At this point my husband, who was really scared by this time, took me to the emergency ward of our local hospital.  When my eyes kept rolling into the back of my head, the  emergency doctor told me to "Quit it".  By this time I was in a wheelchair and could do very little.  I had a Catscan.  The Doctor told me I wasn't having a stroke and sent me home saying I needed to see a neurologist. Of course it was a weekend.  Monday, my oldest daughter repeatedly called the neurologist until they finally said he would see me if I could get there in 15 minutes.  He took one look at me, said it was GBS.  He called the hospital asking "since when do we send people home that are this sick".  Unfortunately he doesn't have hospital privileges and the other Neurologist was out sick.  One of the hospital's doctors got the job of keeping me alive until I could get a bed in one of the larger hospitals where they could treat me.

I was paralysed all the way up by this point. For a week I was in the observation area of the emergency department.  I could no longer eat so I had a feeding tube.  My eyes couldn't close, and my speech was pretty well gone, though my daughters and my husband did fairly well figuring out what I needed.  I remember the Doctors and Nurses arguing whether or not I could give consent.  I wanted to throw something at them at this point.  I was in there, totally aware of everything going on, I just couldn't tell them (every medical practitioner should see the movie "the Diving Bell and the Butterfly).

I was moved to the stroke area for a few days, then transferred to the city hospital.  I was in there for a week, getting a multitude of tests.  I was constantly vomiting which was really scary because I had no control of my neck or head which made the MRI a nightmare. My husband sat there rubbing my feet while I had an MRI that lasted over an hour.  After a week, and a command performance with 30 neurologists and residents I received IVG treatment for another week.  After that they sent me home to my local hospital.  I began getting stronger, being able to sit up, then using a wheelchair and eventually a walker.   I was then sent to the local rehab hospital for physical, speech and occupational therapy. Unfortunately I still had the feeding tube, since I had ( and still have ) great difficulty swallowing.  I was still losing weight .  Finally they took the tube out and I could go home.

Home was difficult.  It was the middle of winter.  I had a few visits from therapists, and went to physio twice a week for about 6 months.

It's been three years and I am still having problems.  I have tremors and spasms alot of the time.  The spasms are like having a bad charleyhorse but in my arms, chest, back, legs, hands and feet.  My fine motor skills are spotty at best.  I tire really easily.  I still have swallowing problems and can't eat fresh fruits and veggies.  I used to be a singer, but now I find it hard. My voice has not come back to it's old level.  My speech is often slurred.  I have alot of problems with balance.  I walk with a cane unless I'm at home where there are things to hang on to.  I'm still hoping for more improvement and work hard at finding ways to do things that I love to do.  I try to focus on what I can do, and I'm grateful that I have come back as far as I have.  My relationships with my daughters and my husband are even stronger than they were , though there have been changes in all our roles.  GBS had and continues to have a profound affect on my life and that of my family.  I am grateful for every day that I have, but I do worry about the future.  It's hard not too.

Bodieroo Bodieroo
5 Responses Jul 24, 2009

Oh. Bodieroo, I encourage you to hang on, As bad as it is, It gives me hope for my niece who is on Total life suppot with a trach, and a gastric tube to get nourishment, She can barely talk and is watching her life and family slip into something she has no control of. I am praying so today tht she is allowed to still make decisions. God Bless us All and you too. Thanks.

I also was diagnoised with GBS Nov 2009 I had been experiencing some falling without any reason to be falling other than it just happened and I would hit the floor it did not matter where I was, be it was the post office or the resturant or at work. the final thing was when I was out giving a presetation my right arm kept falling down on the table as I was leaving my legs gave out and I started to fall as I was leaving. after being rushed to the hospital my primary doctor and neurologist seen me in the hospital and 3 days later they tell me I had GBS and started the IVG for 5 days.they did not do the spinal tap only some blood test at the time I did not know this was required to diagnois GBS.<br />
I continued seeing these same doctors for 10 months only to become a zombie for this total time from all the pain meds and all total of 15 different other drugs.and 7 visits to the local hospital still wondering if I was going to wakeup the next day or be able to get out of bed .I spent this 10 months sitting in a chair, laying in bed doing nothing.but waiting to die.<br />
Finaly Sept 2010 after a night of breathing problems I went to Tampa to another hospital with a new doctor and a whole new regeim of doctors looking at me. only to decide I did not have GBS but that I have Pinky Winky Syndrome from shallow breathing which caused muscle weakness and spasms and that carbine dixode builds up and that I wasn"t buring it off and I only had 20% chance of survival if it happens and I don"t get to hospital. now I am on a CPAP machine and they changed all my medications 30 days later I am a person with a light at the end of the tunnel. I am now walking with a walker or cane, and starting to have a life after a year of not knowing what day it was or when to eat not even able to drive during that year.<br />
I am thankful my boyfriend lost his job and he was able to stay home to take care of me even thou the loss of his income was an issue, otherwise I would have been in a nursing home because I was unable to take care of myself.<br />
This has been the longest year of my i know how others feel that are told they have GBS.

Moremistyeyes, so sorry for you. According to many I have been reading about here, It will get better, God bless you. I see this post was several years ago, How are you now? Needing encouragment myself.

I have GBS and Iam trying

Check my blog for our Guillaine-Barre stories, pics, info, etc. Go to 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! (My husband also has the muscle spasms. Your account is the only place I've ever found mention of this before!!!)

GBS stands for Guillian Barre Syndrome. It is a Neurological disorder where the body attacks the peripheral nervous system as if it were an invader.

You didn't give up. I'm proud of you. What's GBS? A story like yours makes a man like me ask what point does he have living when such courage exists in the world. No pity, please.