A little about me:

I am a mother of two, a 8-year-old girl and a 6 year-old boy, and a wife of 11years to my high school sweetheart. I’m a Christian, an elementary teacher, a violin player, scrap-booker, card maker, and quilter. I am 32-years-old and I am in my 18th month of Guillain Barre Syndrome.

I was a stay-at-home mommy and substitute teaching very part-time when I decided to go back to full-time teaching for the 2008-2009 school year. The year was stressful – a high needs second grade classroom (in a school where the teachers were rock stars, by the way), acclimating my son to half-day preschool/half-day at daycare when he’d never spent time away from myself or his grandparents, and trying to live up to my pre-work high expectations of myself. Needless to say, I spent the whole year run down and catching every little bug known to man.

In the summer, my Ears Nose Throat doctor and I determined that I should undergo surgery to clear my sinuses and repair a deviated septum. I was still battling a sinus infection, but my doctor assured me that she could do the surgery anyway. On Tuesday, July 14, 2009, I went “under the knife” for the surgery. It was more extensive than she had originally thought, she had to remove much more bone. I was supposed to have just mild discomfort, but I just lay on the couch and slept. I couldn’t take care of my kids because I was so exhausted. I downed pain pills every 4 hours as prescribed.

Finally, on Friday, July 17, 2009, I became very weak. By mid-morning, I could barely walk to the bathroom. My stomach was hurting and I had diarrhea. I thought maybe taking pain pills on an empty stomach had gotten to me, so I made my way to the couch, with my husband’s help, and fell back asleep.

At noon, my husband passed the torch to my mom. She tried to get me to eat, but I just couldn’t. My feet and legs were beginning to ache, and soon the sharp pains started. I was in so much pain, it felt like my feet were engulfed in flames! My mom called the ENT to see if the pain and weakness could have been caused by a medication interaction. At first, the doctor said just to keep an eye on me and let me get rest. After 15 minutes, my mom called the doctor’s office again – and she was firmer this time. The doctor called back and suggested that I visit the ER as a precaution.

I could barely get to the car, and I’d never been with my mom when she had driven so fast. The ride was a blur – I just remember that the pain was very intense, but I didn’t want to scare my mom. My husband met us at the ER entrance with a wheelchair. I remember thinking, “I don’t need a wheelchair.” But, sure enough, my husband opened my door and he had to virtually get me out of my seat! The nurses at the ER somehow got me into a gown, started blood work, and gave me morphine.

That night, I got to see what an ambulance looked like on the inside. I was transported to the hospital from the satellite ER. I remember strange things from there, like:

The ICU nurse yelling, “BREATHE, DAMNIT!” I was too ill to clear my lungs by day 3, and was intebated.

I hallucinated on Ativan and Diladid, but since I was intebated and couldn’t move except to blink my eyes, I couldn’t tell anyone.

I ended up with MRSA, pneumonia, pancreatits, a yeast infection that extended down my legs and onto my stomach, and Guillain Barre.

I was on the vent for 30 days. It was very strange – I was in so much pain, hallucinating, thought I was dying. I was in and out of lucidness. My mom being at my side for 10 hours a day, husband working at the hospital, seeing my kids each weekend, and FAITH got me through.

I cried all the time. Each night as I got my evening meds and was finally left alone for an hour, I cried and prayed myself to sleep. When the kids visited, I insisted that I be propped up where I could “nuggle” them. I was in so much pain, but I had to have them in my arms. My son was going through sensory issues, but he wasn’t yet diagnosed. My daughter missed me so much that she cried all the time. I felt horribly guilty. God helped me to break that depression and guilt cycle through prayer and faith.

I got my first shower on day 77 on the skilled unit. Got my feeding tube and catheter out about day 80. Got my trach out on day 88. Left the hospital on day 116. I left because I mentally needed it. The insurance company would have given me two more weeks in Rehab, but I knew that I wasn’t going to progress that much in 2 weeks physically. I needed to be with my family.

I couldn’t move when I was going home… I had to be routinely shifted and scratched. My husband had made sure that we had all the equipment we needed: a manual hoyer, hospital bed, portable potty seats, electric wheelchair, manual wheelchair, stair lift, shower chair, standing frame, etc. I began Home Therapy for PT and OT right away, for 3 days a week. This lasted from mid-November 2009 through March 2010. Starting in February of 2010, I could move my arms a little. (7 months without moving!) Starting in March 2010, I began the trips to Rehab Therapy as an outpatient. In April 2010, I stood with a platform walker for the first time. (9 months without standing!)

I have since healed enough to feed myself, do my own toileting and dressing, bathing on my own, do small cleaning tasks at home, help my children with their homework, and even volunteer in their classrooms. I started walking shortly after standing for the first time, and I am now walking 10-20 steps without the walker (my newest trick)!

I have seen death knocking and have changed for the better because of it! God heals me day by day. I still have limitations: My hands have hyper-extended MCPs that I have OT for. My stomach is numb, pads of fingers and toes get electrical shocks. I have a numb thumb and tops of toes. I get lots of muscle spasms, back pain, fatigue. My internal thermometer is out-of-whack – I sweat constantly, then freeze. I have drop-foot, weak knees, and no reflexes.

But, I AM ALIVE! That’s a heck of a “To Be Continued!”
😀

Hi everyone,

In Feb 08 I started to have tingly, numbness and pain in my toes. It eventually moved up both legs and my right arm felt like a 300lb gorilla was sitting on it. I had much weakness in my legs and it was becoming more and more difficult to walk. I was finally diagnosed in Apr.08 by my Neurologist. I had Epstein Barr virus (mono) which turned into GBS. After a spinal tap, EMG and nerve conduction study, I started my IVIG treatments. Since then I’ve had 7 full rounds of IVIG with minimal positive results. Has this happen to anyone? Now I’m 7 months in and the pain in my legs and arm and weakness at times is almost unbearable. I am very frustrated. Is this how the disease works. Not sure if I’m recovering or relapsing. Just wondering if there is anyone who could add some insight to my situation. I also feel the tingly sensation in my lips and tongue. My doctor doesn’t feel I’m chronic (CIDP) yet, because I’ve never gotten better yet.

Thanks for any replies!

I was diagnosed with GBS in September 2006. After being told I was suffering of all things a panic attack. My symptoms started in mid August and at first I thought I had hurt my back at work. I was a parts pro at Advance Auto Parts where I had to lift heavy parts sometimes and just so happened to have lifted some heavy parts that morning .I started to feel tingling in my feet first then I went to lunch .At lunch I told my wife that I thought I had hurt my back because it was just getting worse and she thought I might need to see a doctor. I reported back to work and by this time my feet, legs up to the knee were numb and tingling also my hands and arms up to the elbow. So I told my boss and took off to the ER. At the ER I told them what my symptoms were and that I thought I hurt my back .They didn’t even check my back they just checked my blood pressure and said that I was having a panic attack. I then got a little mad because no one was listening to what I was telling them and I left. The next morning it was so bad I could just barely walk in to the workman’s comp medical office. There they done x-rays and some reflex tests then sent me home several times. Then I was looking online and went to web md and it told me that I had gbs .So I took that to the doctors office with me and ask the doctor if that could be what is wrong with me . She told me that there was no way that was what was wrong with me because they have found on my last x-rays that I had a problem in my neck at the t3 ,t4 vertebras. Then I was told that they could no longer treat me and wheelchaired me out to the car and told me that I had a appointment with a neurologist in another city and another appointment to have a mri and I should take them with me. So I thought that I was going to find out something as to why I couldn’t walk or feel anything .But I was wrong again. This doctor was the worst doctor that I had ever seen .When I went in the room with my wife the doctor came in and told me to get up on the examining table by myself and I could just barley move but I made it .Then he left the room and came back and sat down and ask me” just what do you want me to do for you “and I told him I wanted to know what was wrong with me, then he said he needed a second opinion, for what he didn’t say and sent me to my neurologist . So I had to wait for a few days and then I went to my appointment with my neurologist. As soon as he seen me in his office he knew what was wrong with me and then he ran a nerve conduction test then scheduled me for a lumbar puncture at the hospital. The next day I got very sick and was rushed to the hospital ER and at the ER I told them I had to see my neurologist that morning and they let me go to see him .When I got to his office I felt like I was going to die .He immediately called the hospital for an emergency admittance .I was in the hospital from September 18 till September 27 .I was suppose to get treated with IVIG for five days .After the first treatment I started to feel a little better then after the third treatment I got really sick so I didn’t get the fifth treatment .The doctor said he was going to order plasmapheresis if I didn’t improve by the next morning .The next morning I was feeling really good again so the doctor stopped the order for plasmapheresis .I was up that day on a walker and that felt really good .Then after a few days I had improved enough to go to a rehabilitation center but my loving wife said no way she would take better care of me than they would so the doctor let me go home and I felt like I was getting better. I could walk with my walker for short distances so I have to use a wheelchair to go anywhere .Then I started physical therapy and boy you talk about tough ,you have to be tough to do all that therapy .The smallest things like peddling a bike, I had to have help with. I couldn’t move my ankles or even write my name .It has been over a year now and I have had some really hard times but my loving wife and family have helped me through those times .I got well enough to go with my family to mammoth cave and went down into the cave and out about 300 steps down and 300 steps up with the help of my son and wife. We also have went to some other state parks this summer .But in July I started to get weak again and have had a lot of pain again .Never really went away just got more intense but now mid November with some new meds I’m starting to feel better. I still have to use a walker and wheelchair to go anywhere but I’m still fighting this battle.