has anyone had gbs for over 3 years

Hi Kelly,

I just passed my 3 year mark with CIDP. Can you explain a little more of what issues your still having? We are happy to help however we can.

Jerimy

Kelly,

Do you take Lyrica or Neurontin at all for your pain in your feet and legs?? Also there is a kind of stimulation they can do that might be able to help your face. I will let someone else respond about that though since I have no experience with it.

I don’t blame you for feeling cheated, I feel that way alot of the time too. We are the same age though I don’t have kids and am not married.

Take care and keep asking questions.
Jerimy

hi kelly & welcome,

no one knows how long nor to what degree any one gbser will recover. i am 7+ years with gbs & still make minor recovery. never give up. never give in. the shortest path to recovery is to rest whenever you are fatigued. fighting it will not help & will hinder you.

pain & fatigue are major gbs residuals. copy & paste this url. i will also bring it up to the top thread. it won’t stay there, but will not be too far down. pthrhttp://www.gbs-cidp.org/forums/showthread.php?t=40&highlight=parry

many of us take neurontin [gabapentin], a non-narcotic, for peripheral neurological pain. neurontin is specific, it can work even when ordinary pain killers do not, even the opiates like methadone. great success w many. v safe. start at 300 mg 3X/day [900 total] & increase by 300 every other day till pain stops. taking it 6X/day instead of 3X/day gets more bang for the buck. 3600 is theoretical max/day that your body can absorb. 5600 is practical absorption max/day. the only reason for the slo build up is it may make you sleepy till your body gets used to it. take care. be well.

gene gbs 8-99
in numbers there is strength

Hi Kelly,

I’m almost a mirror image with the same residual effects. I wish I could get over the fatigue the most since I have three teenagers at home. I do work part-time also beside running the family. I’m 10 years older than you but I too wish I could return to like it was. I’m thankful for how far I’ve come but want tob be 100% better. Having to rest daily puts a damper on my lifestyle. Well I’m off to bed. Oh I’m almost two years post GBS.

Caroline

How about 4 years and I’m still not able to lift my arms move my hands or walk but I will some day I know because I got lots of time and I won’t give up and I’m missing my life and don’t like it but what can I do but wait it out so hang in there we’ll be fine in time.

Danny.

It will be 4 years in Jan — This past year have moved from being totally in wheel chair to walking w/walker and now moving onto crutches — the progress is slow -I have been blessed with a great deal of patience so the progress even at the slow pace is welcomed. It has been tough and sometimes most challenging (typing w/2 fingers ) etc but I just try to focus on what has come back and move from that point.
Hoping to drive soon –so keeping goals in mind that are attainable helps.
I basically discounted the theory of little improvement after 2 years.
All the best
Robert

I think we have all heard a lot about the “two year window of healing” from our neuros. What I now think they mean by that, is that the majority of the nerve regeneration does come after the first two years, once the illness has been arrested. I never believed my neuro before either, but now when I think back on it to when my CIDP was arrested (after 8 months of still getting worse,) I realize that, for the most part, he was right. I have seen small improvements since then, but the majority of the improvements came within the first two years. I have been at almost a standstill since I passed that date.

I think the improvements we see after that time involve more of people finding ways to do things in a new way. BTW I still type with two fingers, as I am actually correcting much less than if I try to type the way I used to. I wish I could offer more hope, but nerves seem to heal the way the neuros decribed to me…

hi kelly. i’m with you. it’s been 5 years now and i’ve resided to the fact that this is it. asleep from the nose down and left hand and knees are partially paralyzed. i am proud of my accomplishments though. i’m about to start a new thread about the vacation i took and tried to do things post gbs and actually did them. don’t give up hope. it’s a tough hand we’ve all been dealt. we just have to learn how to play it. 😉

I have to say, I have NEVER met anyone with GBS, or CIDP for that matter who has given up….. we all seem to be survivors. I think that we all go through times where we are going through what feels we just cant carry one, and thats fine, but somewhere along the line we get that ‘second wind’, and are able to fight through it. I am constantly reminded by the strength we all have when I read through these posts. I really believe that the Lord doesnt give us more than we can deal with, even though it may feel like it at times.

Hi All,

4 plus years for me and I believe that I stopped recovering about 1 1/2 years ago. I’m still getting better, but it’s because like Jerimy I’m doing tasks differently, pacing myself by knowing my limits. My body is damaged from the chest down. I can walk 30 minutes with a cane and my muscles are still very weak. I have periods of great hope when my body feels good and I’m stronger but the weakness always comes back. I’ve entered into the acceptance period and I’m glad.

Take the rest of the day off,

Rob

GBS was the most terrible thing that happened to me. I got the disease in April 9, 2006, the day before I was in my bicycle with my family, next day I could not even stand up, I could not believe it, I was due to go to Italy next day, thanks God it happened before my trip. Anyway, it was horroble. sorry for my english, but I am a Mexican and at that time I was living in Krakow Poland for my work, I had been living there for 3 years, as an expat, life is easy and you enjoy the best, but when I was due to go to an appointment for my next assignment, thats when it happened. We were having family visit in Poland, I was riding my bike and discovering new trails, and suddenling next day I could not stand, at the begining I tought it was just pain, because I was trying new trails, but later in 6 hours, I could not move, the ambulance needed to go to my home and at the hospital I was diagnosed GBS. When I was at the hospital the company I am working for, send me some information related to the disease. I just put them in the drawer, I said, If there is someone that will help me that will be God. Next morning to my very much surprise I could not even move, but my right hand and only rested in the chest. Then I realized that if this was the case, it was for a reason. God loves to be praised, I was going to learn that. So there I was, the scariest thing came later in the day, when they needed to open up my neck and stick a device to change my plasma. I was so afraid, that when I was at the operating room, I did not know how to handle it. So I remembered a passage in the bible “revelations” that describes the face of Yeshua (Jesus) like a bright sun, I concentrated myself on that, I suddenly evevrithg was finished, no pain and nothing. We called on the phone a believers friends to ask them to pray for me, the first night I caught developed in me. I could not cought, my nerves did not responded, the doctors just watched and told us to be alert and call them if more complication arised. Just as a note, the Polish hospitals installations, not equipment are well 30 years old, but the attention of the doctors and nurses if first class in the world, but you believe what you see, and it was scary. Anyhow a I started my plasma treatment, by the 3rd day there was a holiday in Poland and doctor where taking the weekend off. I told the doctor, that by the time he will return, he will see great changes in me. Aside he told me, that he admired my positiviness , but that I should not be very enthusiastic. Anyhow we proved him wrong, thaks God, on Monday I was walking, going up and down the stairs of the hospital without assistance. All the staff was surprised. In 18 days I was out of the hospital and due to Copenhagen for a Benny Hinn crusade, we stopped in Berlin for sightseen, which to tell you the truth I was not able to walk for a long period, as the same as the first two days in Copenhagen, but later we traveled for a Jewish Machol dance seminar in Hungary, where I danced my body off. It so good to be able to move without assistance and supervision.

I thanks God, the hospital staff and my family for all the support.

How do I think everthing started:
1. Living in a foreing country, but I have lived there already for 3 years.
2. I was eating KFC (Kentucky Fried Chicken) every weekend, by the way my family always told me It seemed to be undercooked, which I never believed.
3. Poor diet
4. Believing that you own your life

After the fact, I waked up for at least 3 month feeling my arms weak.

I moved to Italy, I changed my diet, here there is no KFC, but anyway I do not eat pasta and pizza but just once per week.
I have joined a swimming class twice per week
and my post symptoms completly disapeared.

So my recommendations are:

If you are or have been thru GBS:

First focus in God, there is no one else that can help you.
2. after the plasma treatment, you will feel much, much better, every time you go.
3. do not be affraid to go back to your normal life, we are no supposed to be in be and without moving, it takes time, but focus, and you will do it, there is no pain, just walk, run , dance, etc.
4. change your diet, I think that the secret is there, do not eat fat, high proteins like pork.
5. Change your habits, life is one, and should be wonderful
6. Love GOD for the new opportunity he just gave to you.

My life has changed so much, that I will never go back to were I was, I have learned my lesson, and God has been good. Why did it happened, probably because He loves us so much, that some of us, have a hard head and require an special treatment.

Anyway, I hope you the best if you are going thru GBS or you have been. I count myself as a pride winner. but I could not done it myself without God, do not give up. Focus, He is always waiting to be called, no matter what you have done in the past. If He did it for me the lowest of all, you should expect the best for you.

Love you. Hope that my story helps you, to stay strong and believing, He will just do it for you.

Aftermath. I am living now in Italy for a period of 3 years. I am better fit than before, stronger, and happier. I am do to go to my home country in 7 days and tell everuybody what happened to me.

I bless you all: Yevarejeja Adonay veichmereja, Adonay Pana veleja vicuneja, Isa Adonay pana veleja veya sem leja Shalom.

Just a powerful Jewish blessing.

Ciao. I you want to contact me feel free.

Shalom

Wow what a wonderful website…thank you Kelly.
Here is part of my story this is the short one…I knew of this oganization 8 years ago but was too afraid to share maybe now I can get some help sometimes it is hard to ask…I have the later stages…I Think?? I think I got Gillian Barre’ from a vaccination when I had to enter college or I would not be allowed to take classes…otherwise…I was 33 when I got Gullian Barre’ now I am 44…I am on SSI disability and I can’t work…the pain in my feet and ankles get so bad when I do manage to get myself to the ER they really do not treat me well…The numbness,tingling,some loss of muscle tissue in my hands and feet oh yeah and my ankles will never be the same…I get the burning sensation on the pads of my feet thats alot of fun…LOL…just kidding…among other strange feelings on skin…I am always active and lively person and I was and always will be a recovering alcoholic. The time this thing called GB was found I was 8 years sober told the staff of Doctors treating me I had to tell them everything…I am a member AA thats what sober people do tell the truth…did the meetings/service/coffee commitments/co-chair meetings dogwalking and going to school…I loved every minute of it REALLY but then when I THINK too much… it could have been a tick bite…one of my clients dog had ticks on him…[Then the owner moved toke Bandit a Jack Russell Terrier with him he was my favorite]JUST ANOTHER LOSE…I was a trooper until this dam disease hit me…I still think it is some sick joke from god…It toke everything out of me… and does today too…I was run down and the doctors at Saint Lukes Hospital in NY treated me well but it toke them almost 8 months to diagnose me by then I was numb up to my cheast not face…had the plasma physises [spelling is wrong]…nothing worked except the dreaded prednisone…100 mg at 33 I developed CATARACTS…. a slow taper surgery was to follow for that… But I walked…for a price to pay…my eyes… and no I never finish the college thing due to getting sick…too long a story I am crying as I relive this…Now that I moved from the city I get The worst treatment of all they want to do is give me pain pills…milk my medicade they think I am stupid…to top everything I can not change my neologicial doc without a consiltation meeting because we disagree alot…so I live in pain some days are better than most…I miss the city so many good memories…I better end here.
Take care all………….I also hope I helped… I’ll be checking on the board to say hello now that I broke down the doors!! BAD SPELLER
Penny

Hi Penny, just wanted to say welcome and glad that you found us.

Jerimy

Penny,
A few red flags stood out in your post. First off, it sounds like the illness came on rather slowly, not in just a matter of days or even a few weeks. Also, the fact that prednisone helped you to walk; Those two things make me believe that you probably have CIDP & not GBS. Sometimes it may be difficult for the doctors to make the distinction, as they are so similar.
I was first dx with GBS in April of 2002, & it was changed 6 weeks later to CIDP when I continued to weaken, even with plasma phersis, IVIG infusions, & steroid infusions. BTW I also needed cataract surgery in both eyes after I finally got off the steroids. I am only mentioning this, as because CIDP is chronic, you might benefit from continued treatments & get better than you are now.

I think I know or heard of the this CIDP…Thank you for the reply and yes the onset of GBS came slow from the feet up not lungs or chest. I noticed the first signs when I felt unsteedy on platforms on the trains on anywhere up high… I had no pain at the begining numbness and 4th month or earlier these rubber band feelings around my upper and lower arms…when It had reached to my hands…I could not squeeze a tube of thooth paste.
Fear of heights. [I continue to feel this today]all the doctors at that clinic was give me virtigo pills the stuff you get when you have to go on a boat…for sea sickness?? The Hospital system is so slow. I will explain.
It was hard to relate the symtoms to MD [another problem I should have treatment from a Nuerological Doctor immediatly] at the main hospital I was so tired and weak I never spoke up loudly like I do NOW. I just assumed they were helping me…What a lesson I learned…I did not know what was happening to me complicating factor I believe is because I stated I am a recovering alcoholic????
My opinon they waited too long for blood work..the numerous tests I recieved Spinal Tap,EMG,Cat Scans MRI’s [too many]and I too did that 7 day intraveinous blood thing that was my second stay at Saint Lukes…these procedures where performed at the main Hospital Saint Lukes on or about the 8th month I kept getting worse…that wonderful day the
Head Nuero Doctor at the main Hospital he had me walk up and down a hall on my bare feet heels on my toes with doctors and staff all gazing at me shaking and unable to walk or do any of their commands. The love and care and that sentence… “Do not worry we are going to help you” was all I wanted to hear…I had faith at St lukes Staff not the clinic…I was admitted that evening for 8 weeks…they knew they messed up I could use another way of putting it but I think you understand HEE HEE…by the way…all tests were performed when I was inpatient I could not walk at that stage. My clan of friends helped me make my appointments…yes I am angry I got this rare disease…I am sure that comes through…every two years SSI reveiws my case…SSI tried to take my benefits this is plain cruel. I get so sick and tired of the system…I rather curl up in a ball and sleep or cry. I won my hearing last April.
Much thanks for spending the time to write me…I am intrested in any information you have…sometimes others have an insight looking in from the outside.
The most funny thing out of all this I used to be afraid of needles…I fainted alot when I would just see the white coats setting up the needles it is so funny over here I call them Vampires they do not get offended…just for laughs its not your body when you get treated in hospital yeah right not this smart cookie…Bye…BAD SPELLER
Penny

hi penny. i sent you a private message a few days ago. please check it. talk to you soon.
deb:)

Hi Kelly,

It has be almost 6 and 1/2 years for me. The therapists kept saying it’s better than having a stroke because you will recover. That helped till my recovery slowed down. Well, I know what you mean, it IS unfair. I have a wonderful psychiatrist that has helped me to find a positive outlet to my life, and prescribed an antidepressant pill and an anti-anxiety pill, and a pill to keep me in a deeper sleep so the pain won’t wake me so often. Hate all those pills, but it sure helps to keep me pushing ahead.

Typing was crazy. My words had more repeat letters in them and I spent more time going backwards correcting than going forwards. I started playing computer games. Not those stupid violent ones but ones that you have to use your fingers to move, not the joy stick. I kept practicing my typing on the computer and the number pad over and over till my brain and my fingers got use to working right. It was very hard, but I did it. Not in a few days but months.

This disease (syndrome) is a very big, frustrating, challenge; and some days I just want to quit. I know we all feel that way. As time goes on and after a few days of rest, each day a few things seem to get a little easier.

I exercise everyday for 15 minutes, sometimes I cheat and it’s only 10 minutes but I make everything move even it only feels that way or my mind only thinks it’s moving. Over time, I have improved and those toes and ankles started moving a little at first and a little more…..(I take my pain pill 45 minutes before starting)(I am with a pain clinic now so I can get Vicodine because nothing else works for me).

I have cried, sworn, screamed, and I would jump up and down if I could but that really hurts. We really are our own worse enemies. We got an unfair kick in the buns, but push when you can and rest when you have to and try to put a small goal ahead of you. We can’t go back, we can only go forward. I don’t see any improvement unless I look back at the last month and see things I have pushed a little farther and really have improved.

Good luck Kelly, just work one day at a time, because it is too hard to grasp the whole GBS thing at one time.

Judy

[QUOTE=Deb]hi penny. i sent you a private message a few days ago. please check it. talk to you soon.
deb:)[/QUOTE]
Hello kelly…I will have some more time to write you and I have not forgotten you…I may be back on the board later…I have to take care of some cleaning issues and feed my cats…algee is tapping me…I hope you are well wb later…Penny

Kelly – In response to your facial paralysis question, my fiance Ben had the e-stem treatment when he went to inpatient rehab. His entire face had been paralyzed to the point where it looked like his eyeballs were going to pop out of his head, and he couldn’t pronounce his “b’s” or “p’s.” After two weeks of the e-stem, he got much better. He’s almost two years out now, and he still has slight facial paralysis, but not nearly to the degree that he used to.

Penny – Welcome to your new family. Glad you finally found us!

Shannon