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My Story

My life has changed so much in the last months. It was two weeks before Christmas and  I was working and my back was killing me.   I lift a lot of heavy stuff at work and I thought that I had pulled my back. I went to the doctor and she ordered a MRI because my left leg and part of my right were numb so we thought it could be a pinched nerve.  Well, the MRI did reveal a crushed disk so I was told to go to a spine doctor.  I tried to make a appointment, however, they couldn't get me in for a month.  I said OK and just kept trying to work.  The numbness was getting worse and I called my doctor and told them to get me in anywhere they could.  She got me into a different spine doctor in two weeks.  I took vacation from work to wait for the appointment.  At this time I would try and walk and I would fall down. I called the doctor and they told me I had to wait for my appointment and if I had a cane around the house to use it. I got my dads walker and used it to keep from falling.  I finally got into the doctors and at this point the feet were dragging and he sent me right to the hospital.  They ran all these test and said that they were going to operate on my back because there was a bone that was moving and that causes a lot of the back pain.  Two hours before the operation they cancelled it and I was so mad.  The numbness had spread to my upper back and sides of my chest.  They said that they needed to check some more things out because the numbness in the upper back was not consistent with the lower back.  After many tests like the horrible EMG and spinal they told me I had GBS. 

I spent three weeks in the hospital and the rehab hospital.  I was lucky that they caught it just in time before it spread to the rest of the chest. My doctor told me to be happy because another man had GBS not long before me and he didn't make it. I went home in the wheelchair and still couldn't feel anything and that is frustrating.  I remember the first time I could stand and it was great.  My Mom was here and I used the back of the couch to help me to stand up from the wheelchair. I would use the back of the couch a lot.  I used it as a bar to walk with and do exercise.  Now after months of physical theraphy I am walking again but slowly.  I used to play soccer up until just this last year so I guess I am now retired.  I hope to regain most of my strength in the next few months.  I am wondering if I will ever feel all the parts of my body.  Parts of the feet are still numb but I am alive and walking so I am thankful for that. I am lucky and whatever life brings now I will take it head on and be thankful for what I have.  My husband who was great though this whole thing. We have been together for 17 years and I couldn't ask for a better man to be by my side.  My mother is awesome.  It was hard to see her baby going through all that I have been through. My father just passed away 16 months ago and here I was in the same hopital as him and same rehab as he was at one point.  It was hard for her to be there but she hardly never left my side.  The kids are just happy to have Mom at home and out of the wheelchair. Even though they did like to play with it in the house. I am getting sharp shooting pains in the nerves and I am hoping that it is the nerves trying to work.  Stairs are a nightmare for me and people have no patience when you are trying to use the stairs and they just try and go around you all mad. I try and keep postive attitude that I will get there. Going back to work has been hard and frustrating but I will keep trying to get things done.  I know I have to count my blessing that I am OK and just have to work hard to get back to be able to hike and run with the kids again.

katia1421 katia1421 36-40 14 Responses May 16, 2008

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My husband was recently diagnosed with Guillian Barre Syndrome and I would like to know how long does it take to recover? He successfully did the Plasmapheresis treatments but is having a really tough time walking on his right leg. The strength in his left leg is returning but the right leg is weak.

I to have GBS andI know wahat you mean by the shooting pains and they burn too.I am 54 years old so they look at me as an old fogie.I have made it to a came now. I was struck in 2009.Just wondering if the back pain ever goes away

im 19 and i am going thrugh gbs right now and its so frustrating i didnt need a venalator or any of that but i am really lucky ill post my story when i get through this completely.. good luck to u

Prayers for you my dear

I WENT TO BED ON NOVEMBER 5TH 2011 AND WOKE IN THE MIDDLE OF THE NIGHT TO GET SOME WATER. GOT OUT OF BED AND FELL TO THE FLOOR. MY LEGS WERE LIKE JELLO. I COULD NOT GET MYSELF BACK IN BED SO MY FAMILY CALLED 911. I REMEMBER BEING IN THE ER AND WOKE UP THANKSGIVING DAY WITH A TRACH AND BEING PARALIZED FROM THE NECK DOWN. I WAS IN THE HOSPITAL AND REHAB FOR 3 MONTHS AND AM HOME NOW WITH REHAB COMING 4 DAYS A WEE. GETTING READY TO GO TO A NEURO REHAB FOR MORE INTENSIVE THEARPY.

I collapsed at work ad was sorta drug out by my boss. Got home w2as fine.Made it to the hospital and collapsed again and they coudnt figure it out for 2 days. Didnt need a trach. Thank the Lord. In hospital for 7 week, parallyzed waist down.still paralyzed when sent home with rehab.finally made it to walker . Now I am on cane. Still on pain meds. still lots of pain in back and legs as muscles come back into feeling.Good luck and God Bless

i had been saying to my wife fot about a week in june 2011 that my legs and arms were not moving properly; as i had a heart tranplant in 1998 ihad contacted my heart hopital at harefield in england. they advised me to stop taking statins and go to the hospital in a few days if no better.the next day i tried to go out resulting in me falling over, my wife immeidatly got me into the car and drove me to harefield where they examined me and various tests were done, next day a nurologist from mount vernon visited me he also done various tests, he ordered a mri scan ,a cat scan, another test where they insert electric shocks into muscles , then finally a lumber punch in the spine, all this to confirm his diagonosis of gbs. after these tests it was confirmed gbs,iwent home from hospital 3 weeks later,my nurologist had told me it will be at least 6 months before i would walk,it was exactly 5 months before i graduated from a zimmer to a walking stick and a 2 months before i could walk unaided, it is now 5months sincei am walking but i am still not back to normal but i am walking, and thankful for all the staff at hospital,i am extremeley lucky to have come thru this ,so quick

Dear Marcus,<br />
I am a primary caregiver for my 46 year old brother in law. He worked on Tues. April 3rd with leg tingling. By thursday April 5th he was paralyzed, with the exception of one eye and the tops of his toes. He was put on a ventilator that evening. After two weeks he was put on a trach and a stomach tube for feeding. The numbers for blood pressure, blood sugar, etc. all vary and its because of the GBS. AS long as the doctors are treating alll of the symptoms the patient should be fine. It is scary! For everyone. According to him, the body feels like it is on fire. The AC is on and two fans. Communicaton has been a challenge, mostly for him. Because he can use his eye and toes, we created a letter board, 5 lines a-e, f-j, k-o, p-t,u-z. He spells everything by us going down the chard line 1, 2, 3, 4, 5 - once at the line he indicates by moving his right foot (marked YES on the top for answering questions) we then go across the line and again he uses his foot to speel out his wrods.

correction! To spell his words. After 2 weeks he was moved to a rehab facility. Two days later he was back in the hospital and then to a new rehab facility. Progress is slow. But it is happening. I hope you and your family can stay faithful and patient. Feel free to keep in touch.

amydeth - if it is re-occuring then it could be CIDP not GBS (this is the rarer, more chronic version - sorry to say). It is what I have! The two are very similar, but CIDP takes longer to come on and is more likely to re-occur. IVIG seems to work well for both and I do hope you have the acute version. <br />
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My story is on http://mycidp.blogspot.com.<br />
<br />
I hope this helps in some small way.

I have been diagnosed with a mild GBS. I have had tingling in my hands and feet, lack of general motor skills (wobbly walk) and complete paralysis in the face. I was in the hospital for about a week where I received immunoglobulin. After that I started to recover. I have been out of the hospital for almost two weeks now and am doing pretty well. However, yesterday I noticed a worsening in my face. Have any of you experienced a worsening in your recovery process? If it continues to get worse, I will contact the hospital.

My Mom is 57 & very healthy she walks everyday over a mile,she had the flu a couple weeks ago & recovered quickly, she was here the1st weekend in February & went home on the 6th and was just fine (she took the train home) I spoke to her at 10pm & she was getting ready for bed (she had backache & headache while at my house,but she has had those for years from many years working in a factory and just takes aleeve) By 4:30 am when she woke up for work she could barley walk,my Step dad took her in to ER,they did blood work, cat scan & MRI & sent her home 7hours later ,within 4hours after she lost all feeling in her legs, my Brother rushed her into the Best Hospital we have out of town & she was diagnosed with GBS after a Spinal tap -They started her on IVIG and she just rec her last treatment Monday Feb 13th, she is still completely paralyzed ,even her throat muscles & has a breathing tube/ventilator, they said they are doing a Tracheotomy next week to make her more comfortable, she has nerve damage everywhere ,everything is burning and her body is aching ,they have her on pain meds & blood pressure meds as she was up to 211 on Saturday, but thankfully its now back under control, this is such a scary & awful syndrome it hits so quickly & we are just praying she recovers quickly & will beable to walk again

I began having symptoms around Christmas 2011. My feet were tingling essentially could not feel them. I thought I might have overdone it on the bike because my muscles were terribly sore and no amount of stretching would make it better. I went for a ride the following day to try to ride the soreness out and had a good ride but this did not alleviate the creeping numbness and pins and needles sensations I was experiencing. Slowly the numbness traveled up my legs and had terrible ataxia. Still working it was very hard to sit on the floor and provide therapy to my patients. After several visits to local doctors and a trip to the er I was sent home after being told it was a virus. While In the ER I told to doc that I could not move the right portion of my upper lip. He said don't worry about and sent me on my way. The following morning I was mostly unable to walk and could not move most of my facial muscles and my speech was definitely impaired. My tongue had started to become numb. After consulting my pcp I traveled to a large metropolitan hospital and went to the ER only to have the ER doc think I was only there for drugs or whatever. After having an emotional breakdown did he relent to have a spinal tap done which then confirmed the diagnosis of GBS. After a week of ivigg I was sent home. While in the hospital my face was completely paralyzed but I was able to walk and use my extremities which I was told was a good thing. Now after two weeks being released from the hospital I am working half days as a speech pathologist and riding my bike some around town. I feel extremely blessed to have recovered the way I have. I am very concerned about the lingering fatigue but if that's the price I have to pay to survive this I'll take it. I hope and pray you all make full recoveries.

i am going thru it at thee moment

me too i WAS DIGNOSED OCT 10 OF THIS YEAR HAVING MORE TROUBLE WITH MY FACE AND EYES YOU THINK WHAT US GOING ON WITH MY BODY WAS IN HOSPITAL FOR 3WEEKS AND IN REHAB FOR 4 WEEKS BEFORE THEY SENT ME HOME STILL N RECOVERING WHAT DID YOU DO ABOUT WORK BECAUSE THERE IS NO WAY I CAN WORK

It sux it's been 2 yrs 4 me

Hi I was reaching out to you to see if you fully recovered from GBS. My husband was recently diagnosed with Guillian Barre Syndrome.

Keep documenting the signs and symptoms. All of them! When Dr.s don't have the answers, ....they put you off.! I was Dx with GBS 25 years ago at the age of 18. I've continued to have ongoing problems but I have yet to find a medical professional who cares. I became a nurse to find my own answers. I am flabberghast at how many people have their sanity questioned. It's a terrifying experience. I'd be happy to keep in contact with you. If you know something is wrong, follow your instincts. Dr.s are not Gods as many of them want you to believe. It doesn't look good for them when they are ignorant and they will put it off on the patient. Since I have become a nurse, I get a little more respect and a couple have actually admited I know more about it than they do! Stay strong

My Dad has GBS.. He's in rehab currently. It started on November 18th 2010 when his foot went limp at work. By 2am on the 19th he couldn't walk. Mom called an ambulance and when he arrived at the ER he was diagnosed with a pinched nerve due an accident a few months before. After that they sent him home onlty to have to turn around and come back and get him b/c he was paralyzed from the waist down. By that night he'd lost function of his arms and was rushed to our state hospital.<br />
<br />
After IVG treatments he regained his arm strength back but still can't walk. He's in intense therapy and they hope will eventually be able to transfer himself from bed to the wheel chair. Its been a long journey...I'll be glad when I see him walk out!

I was hoping to find a support group for GBS, my daughter age 16 came home from school one day about 2 months ago, she had a really bad headache, her legs became numb and tingly and her hands were heavy and tingly. She couldnt open her eyes. I immediatly called 911, her symptoms were very scary. At the hospital they gave her ib profin and sent her home, she could barely walk. The next day , her legs were alot worse, they were very weak, wobbly, i took her back to the dr's and they sent us to another hospital out of town to PICU. There they tested for GBS, all the test were coming back negative. At this time, she lost ability to walk, legs now aching, tingling. Her hands began getting better though. Her kness buckled when she stood, her right leg seemed to be more affected than the left, it kind of dragged behind her. THey did a spinal, emg, electrocariogram, and blood work, mri, everything came back normal.. The dr suggested that she was having pychological problems and wanted attention... they discharged us after 6 days. It has been about 7 weeks, she still cant walk without a walker or help, Her right leg buckles with every step, her legs are very weak and she gets tired easily. She cant walk more than 20 feet without resting. She has this weird waddle gait when she tries to walk. We are in physical therapy 2 x's a week. Once in awhile she will get tingle back in her legs and they ache all the time. Has anyone ever had this experience? Can you test to early for GBS and have a misdaignose? SHe is a very outgoing girl, had a job, which she had to quit, has a nice boyfriend, rode horses, active in 4-H, i was livid when the dr. suggested mental problems. Also she is worse now than when we were discharged f rom the hospital, but it seems to have leveled off. I would appreciate any comments.. thanks

My dr said i had pychological problems and wanted attention 2 but i have had gbs 2 yrs

Yes, It can be diagnosed too early. One of my best friends has GBS, &amp; originally when she was admitted, they thought it was GBS, but it came back negative after her first spinal tap. Luckily, she was at a hospital where they were very thorough, &amp; went with the guess of GBS. They started her on light treatment (which is not harmful if you DON'T have GBS, it just would not be helpful) while they waited for the results of a SECOND spinal tap sample. The second sample proved it was GBS. And even though she had all the symptoms during the first round of tests, it did not show up until the second round. If you haven't already, I would definitely get a second opinion. Because without the medication, it can be hard to return to close to what your activity level was before. Even with it, the norm is between 90-98% of what you were before.

I don't know if you ever received an answer to your questions regarding Guillian Barre Syndrome. But my husband is recovering from Guillian Barre Syndrome and was diagnosed on December 20, 2013. He had 2 spinal tap test and a host of other test before it came back that he had GBS. He is now in an in patient rehab where it is a constant struggle to walk. His right leg is so weak that it drags when he tries to walk with a walker.