AnonymousMay 11, 2007 at 11:52 am
I was diagnosed with GBS on July 2005, and was in rehab for 8 weeks to learn how to walk again and such………back to work end of October.
Would like to share stories and to offer help.
I have recently relocated to Hong Kong from Vancouver, Canada.
AnonymousMay 11, 2007 at 3:32 pm
Thought I was the only Asian GBS survivor on this website.
We have alot in common.
We are both asian (I am ABC).
How old are you?
I was stricken in 3/31/05 coming back from Canada (vacation) to California.
To make a long story short, up to know, my arms are the last setback for me (80% – 85% back to semi normal).
Hope to get back 85% – 90% by 11/14/07 (two year aniversary since being discharged from the hospital).
Love to compare recovery/rehab, insurance horror paper work, etc. stories w/you.
Just got the great news that I’ll be working again on 6/4/07.
Hope I can prove to be more of a positive worker than a non productive worker the past few years.
Keep in touch.
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AnonymousJuly 31, 2006 at 1:53 pm
I’d just like to ask if anyone knows of anyone that has made a full and total recovery from GBS with full use of everything, no residual pains or fatigue? I’m sure hoping someone out there has a positive answer for this one. I’d love to hear about them or from them. thanks.
AnonymousJuly 31, 2006 at 6:09 pm
I don’t know if I can say my husband has made a “full” recovery, but considering where he was a year and a half ago and now, I’d have to say it’s pretty close! He still has the residual fatigue and can’t walk for long periods, but he’s doing well enough that he can do 95% of what he could pre-GBS.
I think with GBS everything is so unique to each individual that it’s hard to say how the recovery period will be.
Good luck, and keep the faith!
AnonymousAugust 1, 2006 at 1:11 pm
I thought for several years that I had made a “full” recovery. Now I’m finding that I didn’t really but I appreciate what I CAN do alot more than I used to. I have run the Boston marathon twice since my GBS in 2002. I don’t run like I used to and right now I can’t run at all. I look forward to getting back out there and knowing that I will keeps me going through this tough time.
AnonymousAugust 2, 2006 at 5:08 pm
I know GBS is unique with each person, but I keep looking for that one that has no residual fatigue. That’s what frustrates me so much, I just stay so tired all the time. I keep hoping to hear that someone, somewhere got over it and isn’t tired any more. But I agree, I’m so totally thankful for what I CAN do and I know I’m much better off than some, so I am blessed. Thanks!
AnonymousAugust 25, 2006 at 12:28 am
I was diagnosed with GBS four years ago (August 1, 2002) 3 months after my second child was born. I was in the hospital a total of 9 weeks – 5 of that paralyzed from the neck down, trach with ventilator, the whole “sha-bang”, the other 4 weeks I was in the same hospital but in recovery and rehab. And then when I returned home, I was in out-patient rehab for another 9 weeks.
I was so blessed to have a great medical team who were aggressive and informed about GBS.
By December 2002, I considered myself completely recovered but joined a gym so I could work out a couple times a week for a year to continue strengthening my body. I have had no residual weakness or symptoms (or symptoms that I pay attention to: sometimes when it’s cold my fingers feel tingly or numb – but I live in Arizona so that rarely happens. Or, when I’m really really tired, my legs will have a slight ache. This has only happened a couple times).
Any fatigue I encounter I attribute to being in my 40’s with two young children and I don’t always get the sleep I need or eat the way I should.
I just wanted to offer you the support and encouragement you were seeking that YES there are those of us out there who claim that by the grace of God we have been granted a full recovery from GBS.
Blessings to you.
AnonymousOctober 5, 2006 at 4:20 pm
I was training for my 25th marathon when I was hospitalized with GBS, two years ago. One year ago I ran that marathon. I don’t know if I am fully recovered. Some times I have sypmtoms, but at 58, they could also be just “getting old” symptoms. I do know that I am much more physically capable than many women my age, so I’ll take that as a good indicator that I am recovered, and move on to the next run.
Good luck to you.
AnonymousOctober 6, 2006 at 9:10 am
My 16 year old son completed “extended rehab” (acceleration training) yesterday. His onset was 6/06 – he completely lost his legs and had pretty severe numbness in his face. Also high blood pressure.
Today his only “issue” athletically is that he has lost a few inches on his vertical jump. Trainers think this will come back with time. A little less than four months have gone by – and he is very close to being back to normal.
AnonymousDecember 14, 2006 at 1:08 pm
I was diagnoised with GBS May this year. I’m a recreational/long distance cyclist. I resumed pysical activity in mid-July and even complete a century with only 2 weeks of cycling under my belt after GBS. I continued to see improvements and felt better and better. What frustrates me now is that I have increasingly more boughts of fatigue and the buzz in my feet is getting louder. It scares me but I attribute it to the fatigue.
Months back I use to think that I was nearly recovered, I may have even said 85-95% depending on how good I felt that day. And I am greatly improved but as I try more activities and continue persuing my goals I am seeing more signs of weakness and fatigue. I try to slow down before I’m too tired but it’s not always easy to judge so I still cross the line too much in my opinion.
I’d like to believe that I will recover fully from ALL of this but I wonder. It’s hard to know what to attribute the “tired” and “buzz” too. I stay watchful and probably always will.
AnonymousDecember 20, 2006 at 10:34 pm
[QUOTE=PianoWoman]I’d just like to ask if anyone knows of anyone that has made a full and total recovery from GBS with full use of everything, no residual pains or fatigue? I’m sure hoping someone out there has a positive answer for this one. I’d love to hear about them or from them. thanks.[/QUOTE]
my stepmom’s grandson had a bout as a child and has made a 100% recovery.
mine came on in my 2nd half of the century in this corporal existence, and if i were to quantify the recovery, i’d say 80%. i feel fortunate, blessed, and thankful.
some days are better than others, but any day upright and not 6′ under is a blessing.
how are you feeling?
AnonymousDecember 23, 2006 at 3:25 pm
Well, I haven’t been on in awhile and it’s good to read everyone’s mail. It’s encouraging to know that some are almost 100% again, especially the young ones. It is a blessing to be walking around this Christmas season and being able to use my hands and fingers and make candy and cook for my family. God is good. Merry Christmas to all of you!!
January 12, 2007 at 11:52 pm
One thing that’s very obvious is how different each person’s GBS experience is. For me, I was hospitalized Aug 2, ’05. As of now there is some facial numbness – but my smile is just about the same on both sides. Almost every day; I have to check to see if my socks are bunched up at the balls of my feet – they never are! After being totally paralized and on vent; this is great recovery. To be honest; my stamina is better now than before I got sick. I make an effort to walk every day and ride my stationary bike, so at 66 I’m in better shape than before GBS. Only a couple of months to spring golf.
Happy New Year!
AnonymousJuly 21, 2008 at 9:01 am
Hey Katsport, you pretty much some up my status. It’s been 6 months since the onset of my Miller Fisher experience. I am 95%ish percent ok, but I have weird senstions in my arms and legs, especially after a busy weekend with the kids and the thought of a relapse scares me.
I’m nervous about getting back to cycling, but know that I have to, it was my way of releasing stress and getting excercise.
AnonymousJuly 25, 2008 at 6:15 pm
I am 60 years old. I was diagnosed with GBS on May 28th of this year. I was lucky, I guess, because when the weakness first came on, after a week and a half in bed with a “virus”, we called a friend who is a doctor in Minneapolis (I live in New York). It was Memorial Day and my doctor was away. Our friend listened to my symptoms, called a couple of his colleagues and told me to get to the hospital ASAP. When I was in the Emergency Room, he spoke to the physician on duty and the Neurologist who came in to see me and told them they suspected GBS. That really simplified things as I was officially diagnosed after only a couple of days. The treatment was started within 4 days of the onset of symptoms and I spent only a week in the hospital and two weeks in rehab. Fortunately, I was never on a respirator. I was released from rehab on 6/17.
Recovery for me seems to have been easier than for many of the people whose posts I have read. While I still have some pain and a lot of numbness on my feet – from the balls of the feet to the toes – I am able to walk without my cane for moderate distances. The tips of my fingers are still numb as well. I still have no jerk reflex in one leg or in my arms, but I am getting my strength back, although my endurance climbing stairs or walking up any kind of slope is pretty bad.
I am a former lawyer who is now a HS teacher and college professor so I have the rest of the summer to build up my strength. I plan to be back in the classroom in September. From what I have read about GBS and the experiences of my fellow patients, I think I was incredibly lucky to have a case that appears to have been either quite mild or was caught, diagnosed and treated very early.:)
AnonymousNovember 17, 2008 at 1:21 pm
Hello Pianowoman, my name is Maria, and I wanted to let you know that some people do make a full recovery.
I had a very severe case 5 years ago, it was so bad that the doctors were about to pronounced me death, but I “came back” I was in the hospiatl for months, I had a feeding tube, and could not even talk.
They started PT a week after I was admited into the er, they also did electric schocks trough out my body several times a day.
Any ways, after only three months of intense PT and painful shocks I was back to normal.
now, five years lates, I am completly healthy, married and with two kids, I have not had any complications whatsoever.
I hope this will make you feel better, doctors said it was a miracle, my family and friends prayed a lot for me.
Hope you are doing well
AnonymousNovember 17, 2008 at 10:54 pm
I wish you a wonderful Christmas this year and may you see many more with each day getting better. I am dying to make my Christmas candies again and even bought my ingredients. I love doing that at Christmas and was not able last year but maybe this year I will see candy again! Hugs
AnonymousJanuary 29, 2009 at 7:43 pm
I can say I have no more residiual fatigue – meaning I no longer feel the fatigue I did when I had the MFS/GBS. I do accupuncture, and actually, I noticed a difference within 2-3 sessions – early on in my MFS/GBS (16 months ago).
Fatiguing muscles is a different story. I’ve overexerted 3 different muscles on 3 separate occasions. That presented itself as bad sprains, but on hindsight, I think I overdid it, and my nerves had some communication problems with my muscles. In each case, within a day and a half, my muscles were back to normal. I guess 3 overexertions in 16 months is not too bad, and I really hope that is something that is part of the “getting better slowly” aspect of this syndrome. In other words, I hope I’ll be able to exert myself to the same level in years to come, and have no symptoms. Time will tell.
Meanwhile, I hope your fatigue improves. Wishing you the best.
AnonymousFebruary 23, 2009 at 7:35 pm
Just a little update on me. I was diagnosed with GBS on 8/3/08 just as I was about to compete in the World Sprint Championships in outrigger canoeing. Kind of an obscure sport, but can’t be beat if you are a water baby. Anyway, I went down fast and hard, which in a way was a good thing since the drs. couldn’t ignore the symptoms. I had lost both legs in 24 hours and was on ventilation in four days, I think. I say, “I think” because my mind is already starting to insulate me from the experience. If anybody wants the exact time frames my wife kept a journal and I can ask her for you.
Anyway, I was totally paralyzed for about ten days. Ventilator, eyes taped shut, the works. I responded immediately to the plasma pheresis and started moving my arms after the first treatment. The ventilator came out two days after the last treatment. They kicked me out of ICU right after that. I think I was there two weeks. I spent another three weeks at an acute care facility doing serious PT work and went from sitting in a cardiac chair to a wheelchair to pushing the wheelchair myself to getting in and out myself to using a walker. At that point they kicked me out of there and sent me to a rehab clinic where I worked really hard for a week and I walked out of there on 9/12 using two canes. A week later I quit using both canes and a week after that I stopped using canes at all. I was walking every morning to my beloved Starbucks, talk about an incentive…. I started working out with weights at our club on a daily basis to get back what I had lost. I first started out at about a tenth of what I could do before the attack, but now I am actually doing better than I used to just because of the commitment.
By early October I was so bored I was counting the hairs on our cat. Not a recommended practice…. I went back to work on October 13 and my boss (Cummins was absolutely Sterling about the whole ordeal) told me I had control of my throttle. I started out easy at first, but that quickly morphed into me back to full throttle.
I’m back to paddling our outrigger canoes now that I don’t have to worry about drowning if I get pitched in the water! Now I’m working on building that stamina up again as well. My goal is to be ready for the World’s in Vancouver in 2012. Not worried about making it. Just getting to the time trials after what I’ve been through will be more than enough.
Today I still have a little tinglyness in my toes and the feeling of sand in my toes. If I get really tired the right side of my mouth gets kind of puckery, but if you didn’t know me before the attack you would never know I had GBS at all. While in recovery I was constantly mindful of a relapse and since nobody could tell me how far I could push I just kept pushing until I felt I wasn’t doing any good any more. I can remember climbing stairs at the acute care facility and feeling the tinglyness in my hands all of a sudden and thought, “Whoa, better quit for the day.” Other than that I just kept pushing and my body kept responding.
I will be eternally grateful that I came back so fast and I will always be there if anybody needs me for support. Get better everyone. You W I L L get better.
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