My GBS Story
AnonymousJanuary 2, 2011 at 2:38 am
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!”
AnonymousJanuary 2, 2011 at 12:34 pm
Sorry you have GBS and have been through such a rough time.
You have a couple of wonderful caregivers with your husband and mother.
I know from my own experience the hallucinations were horrible to deal with when they seem so real and frightening.
Wishing you continued improvement.
AnonymousJanuary 2, 2011 at 8:25 pm
Welcome back to the land of the living! From reading your story, it seems like you came close to going the other way. It’s good to see you are living in the moment, and are improving. It has taken 3+ years for me, and still am getting better. With time, persistence, and prayer you will get back up to speed! keep us posted on your continued improvements.:)
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My GBS story
AnonymousSeptember 8, 2008 at 3:16 pm
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!
AnonymousSeptember 8, 2008 at 4:07 pm
Hi cack, Welcome to The Family. The difference between GBS and CIDP is the length of onset. From Feb to Apr sounds alittle too long for gbs onset, with no recovery. In my opinion it sounds more like cidp. I’m assuming your neuro has riled out the chance that the symptoms you are having are not linked to ebv. Since ebv is an autoimmune disease the chances that you have cidp are better. What were the results of your lp and ncv/emg? Have they done another ncv/emg to compare to your baseline one to see if there is any improvements or more demyelination? I don’t agree with the statement that he doesn’t think its cidp yet because you have not recovered yet, with gbs there is a recovery, with cidp there is recovery to an extent-that extent is different for everyone. Sometimes ivig doesn’t work for everyone, 70% get relief with ivig, and its the same with pp, 70% do well. If one doesn’t work for you than try the other if able to. Some people even use both treatments, first pp follwed by ivig. Your pain needs to be controlled. Neurontin or Lyrica or antidepressants are good. Neurontin is good for nerve pain where opiods don’t always work well. Pain is an energy zapper, recovery is possible without pain. If you aren’t already, keep a journal, it will help you chart your progress and it will help the dr treat you better. Please feel free to ask any questions or just vent when you need to. Take care.
AnonymousSeptember 8, 2008 at 4:25 pm
Hi cack, welcome! My experience with GBS is much what Cheryl has said. The onset is usually that much quicker. Two months is a long time. Most of us who had GBS are getting into recovery by that time. I was totally paralyzed and on life support and at the 2 month marker was regaining some movement and was weaned off the respirator. I came out of ICU and was back on the neuro ward waiting for a bed in the rehab centre.
Looking forward to more posts from you. Don’t be afraid to ask questions or come here to vent. It is safe here. We have all walked in your shoes. Talk to you later.
AnonymousSeptember 8, 2008 at 6:15 pm
Let me give you some more details. In early February, after my toes were tingling, my entire right side was also numb and tingly. Within the next 4 weeks both my legs and arms felt totally numb. When I laid down I would get the sensation that I was completely paralyzed up to my chin. I could move however even though I had that sensation. It took 10 weeks before I was actually diagnosed. Everyone I went to thought I was nuts. I finally found a great Neuro doc – he said there are many different “levels” of GBS. Not everyone makes it to the respiratory stage. Mine was in my legs, arms, lips and tongue. I never lost my ability to walk although at times it was difficult. From what I have read, GBS patients recover between 6 and 18 months. I’m at 7 months which seems a little early on. My spinal tap came back high normal and my nerve conduction was abnormal. I’ve since done another nerve conduction and there was improvement from the baseline. A few weeks ago I went on vacation and actually felt decent for the first time in 6 months. However, when I returned home it was like a light switch went on. My symptoms became considerably worse, especially intense pain in my legs. That’s where I’m at right now. My neuro doc feels that I should be better for at least 6 weeks and then having symptoms return before I am considered to have CIDP. Yes, he is confident of his diagnosis. However, what do you think – if not GBS, then what? What other alternatives are there for pain?
AnonymousSeptember 8, 2008 at 7:46 pm
Just a thought. You were getting better and then went on holiday. One thing we can all tell you is that when you over do it it seems as if things are coming back. It feels as if you are relapsing and getting it again. Perhaps with the vacation and the return home, you were tired, trying to catch up on things, go back to work and the “ole bode” was telling you NO!!! SLOW DOWN!
Anyway, just a thought….
AnonymousSeptember 8, 2008 at 7:55 pm
Sounds to me, like what Jan is telling you sounds right.. Perhaps, just need to rest.. I’ve had flare ups/relapses that they are now calling cidp, but deep down I still think it was/is just a continuation of gbs, and my nerves hadn’t fully healed…. I came down with gbs 10/07, and most of my tingling/numbness is gone, although I have periods of fatigue… I’m taking a pulse oral methylrprednisilone treatment and ivig treatments and think things are getting close to a remission…. Sounds like things are typical symptoms what your going thru….The reason I wondered about your diagnosis, is I’m wondering if you have improved generally progressive since you hit bottom? If you are in fact getting better, than your treatments must be working, and vice versa…. Does this make sense? deano
AnonymousSeptember 8, 2008 at 8:55 pm
My doc said that I was basically “stuck” in neutral having really never gotten better since onset. Felt best I ever had when I was on vacation, then came home and felt worse than ever. I’m so frustrated. The disease just keeps going and going it seems. Time will tell. Not sure if I should continue with IVIG treatments.
AnonymousSeptember 8, 2008 at 9:20 pm
Sounds to me like you should explore other treatment options perhaps, cause if your not getting better, than there has to be a reason……:confused: 🙂 That doesn’t necessarily mean quitting ivig, but there are treatments in conjunction with it…. Hope you get better… At least holding your own, can also be a good thing! dean
AnonymousSeptember 8, 2008 at 9:23 pm
Deano is right. Also, remember that when you were on holidays, you were resting and enjoying yourself. Probably stopped when you were tired. I think that may be telling you something. You can not rush this disease. It is going to come back and bite you! You need to go slow and let your nerves heal. That takes time.
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My GBS Story
AnonymousNovember 21, 2007 at 9:49 am
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.
AnonymousNovember 22, 2007 at 8:40 am
Thank you for being a part of this family. It’s good to hear that you have made some significant recovery even with serious setbacks. Many of the members of this great support family have a lot to offer. One idea that has helped me a lot is to learn to be attentive to signals from my body. These signals let me know when I am at my limits. Then I know it is time to rest.
As I have scanned the messages on this website I have found people or threads that seem to address my needs. They have helped me understand and deal with the live changing event called GBS/CIDP. We need your strength and courage also. Take care and be Well.
AnonymousJune 25, 2008 at 8:22 am
Ive just been reading your post and thought it would be nice to talk to someone who is going through what we all here seem to be going through. My daughter has recently been diagnosed with GBS and is struggling all the time, she is 17, and has had GBS now for Four very long months, why does nobody know about this? why do the doctors know less than us?:confused:
I tried once before to post a note to this site but im a bit dim when it comes to computers, so if you receive this, please feel free to contact me….
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