Longest and shortest FULL recovery times for GBS

I am not fully recovered yet, but I amazed my neuro with how fast I did get this far. I drove in to the hospital on June 17th, I was intubated on the 18th. Revived and began ivig on the 19th. I was ready to leave the hospital on the 23rd (6th day). I then spent 2 weeks at an in-patient rehab hospital undergoing 3 hours of pt/ot each day.

Home in 21 days on July 9th.

By then I could dress myself, do the stairs (while holding both railings). I could walk (against my doctors advice). I still used a walker outside of home for safety sake and due to a lack of endurance. I showered sitting down and used the toilet with the aid of arm rests. I began outpatient pt. Pasted my ot evaluation, no Ot required.

July 30th I chose to begin driving. I could have tried driving sooner, but I had rides from family up to that point. August 3rd I began driving to rehab on my own.

August 12th I was ready to stop outpatient pt, we agreed that I would continue for two more visits anyway as I still had move sick leave remaining. The same day at the neuro’s office I had regained my reflexes. My Neuro had been telling me all along that in most cases the reflexes never return. I had already finished with my oxycodone by that point and got advise on how to come down off of the 2700 mg a day gabapentin. I don’t need naps anymore. I rest in bed, but don’t need the extra sleep.

Today September 5th I’m off all meds, I shower standing up. I droving into Manhattan yesterday. The FDR/Harlem River drive was slammed so I slowly drove down Park Ave around midtown and back. 2 hours spent in the car.

I still have numbness in my feet and calves. After too much exertion they start to tingle a lot and I usually spend the rest of the day on the couch or in bed watching tv. I really got the hang of this DVR.

My full-pay sick-time will be done on the 90th day so I’ll be going back to full-time work on day 89 September 14th. I feel a little embarassed by my own quick recovery when reading about people who haven’t recovered after 4 or 5 years. The best time was when I passed a major milestone and my wife nearly wept with joy.

Sorry not FULL recovery, but my tingly-numb feet are not fully numb and have nearly normal feeling/full control of them.

Hey Hedley

Wow, full recovery eh?

Whether full recovery is possible is often doubted by many forum members. If 1 in a 100 000 is number of GBS/CIDP patients then it would follow that there are roughly 3400 GBS patients in the US and Canada and 66 973 worldwide. Does our community on this forum feel relatively small with these numbers?

And if 70% fully recover do they abandon us when they have recovered?

I suspect that is the case. When I feel down about how long recovery is I speak to my liaison from GBS Canada Foundation. He recovered and was far more afflicted for longer than i was. Now he is back to physically demanding work and weightlifting. He does get fatigued but not in a way that interferes in his life and this is improving.

Speaking with a survivor was one of the most important moments I have had working towards recovery.

I realize that this may be cold-comfort to our CIDP family here, however I have read testimonials of people who have survived this as well.

As to your original question, I dunno. Some here have had it in residuals or CIDP for years in which cases we can say as long as decades.

Where are all the folks who have fully recovered? Greatly enjoying life I hope.

IS this a trick question?? Thought it was at first, but now I think I have an answer. Mild cases can have a full recovery….not-so-mild cases are probably not 100%. But 95% is still pretty good…still an A. And by what standards should we judge? Recovery is in the eye of the beholder.
My first GBS in 1986 was fairly mild….if you can use those terms with GBS!! Difficulty walking, pain, numbness..I have blotted out many of the symptoms. I had full recovery for 20 years… leading a blissful life in Sunny Florida. But perhaps that was only on the surface, maybe that virus/whatever was lingering in me…waiting for me to overstress my body. My next bout of GBS in 2006 had me unable to stand for 5 months. Four years later my foot is still numb and have to be careful the way I put my hands when I sleep or they will be numb when I wake up. Carrying heavy packages too long brings residual pain for a few days. But what is worse is the FEAR…that something will trigger it again. I had a squirrel in my fireplace last week and was told to open a door and he will run out. FEAR made me hesitate because if he spread his fleas on my Oriental carpets, would I need an exterminator with harsh chemicals which could set off a reaction or if he bit me, would I need rabies shots, etc….. I wonder if many of us are not in a protective mode….limiting any kind of stress to the body, playing What If this will set it off???
So my answer would be…..it depends….like Humpty Dumpty, all the king’s horses and all the king’s men, couldn’t put Humpty back together again….but a smaller crack, no problem. So if one is reading this, the crack musn’t have been THAT bad…..although it seemed so at the time….Time heals all wounds (or wounds all heels!)

Sometimes I am full of so much fear – I don’t ever want to repeat Christmas morning 2009 – waking up being able to move only 3 fingers and talking with a horse voice. But, still able to breathe on my own – oh, thank God for that. So, I nap when I am tired, am careful to not overdo, and panic when my feet become so numb they no longer tingle. I never want to return to that day, so I pray a lot, tell my husband I love him frequently, and always appreciate the gifts I have been given. I take each day as a day to be cherished. I don’t know if we fully recover, but I do know we all pray to never go back. So, be grateful for what we have – work to recover more – take loving care of yourself – and support each other via this forum. Please take care of yourself and know you have a special place in this world.

In my opinion, the term “FULL” does not apply to GBS. I have seen people come to this site after 20 years as things get worse as we get older. I saw a nurse the other day and she commented that most people that have had GBS you don’t see in public.

I did have a couple of years where I could do more, but then it all turned around again…

2 years on from gbs and i still have fatigue that can bowl me over some days ,still cant run , just starting to be able to bend a little at my knees , muscle cramps , when im tired my body feels like its vibrating inside, slur words when im tired, hand tremors mainly when im tired, cant walk long distances without my friend the crutch. But i have come a long way that was until my husband needed heart by pass surgery almost 2 years to the day i was diag with gbs 3 weeks ago . I feel like i ve gone back 12 months in my recovery but my dr says its stress that has set me back. My husband looked after me when i came home from hospital as i was dependant on him for most things so now im looking after him. what dosnt kill you makes you stronger and every day i stop and smell the flowers ..keep smiling !:)

I disagree with the doctor who said, “The longer you go, the less your chances are for a full recovery.” You are not even up to two years. I think you will see this typically Sloooooow recovery will continue and continue. It sneaks up on you. So my advice is not to look for improvement….just go along living your life…grateful for being out of the hospital. Grateful for all the little things you CAN do. GBS teaches us to live in the Now…very Buddhist. For the first few months after I finally could walk, I would have to hang onto the door frame and pull myself in..my thighs were too weak to step up for more than an inch or two. Now I chuckle that I can walk over the threshhold normally. So…stop looking for improvement, it will come in the next year or two…two years is too soon for many of us. And if it isn’t FUll recovery….big deal. It reminds me of parents who would come in for a conference complaining that their kids were earning C’s..70%….I said to them, if you could learn 70% of a new language, wouldn’t you be proud?? I would. Expecting 100% is dangerous…If my Gifted Math students could get 70% correct, they basically knew the process,,just made some sloppy mistakes .AIM for 100% and be happy with what you get…..if you put as much effort into it as you could. I am trying to learn French and would be thrilled to learn 50% and that woud be an F. (And this with a brain that is recovering from GBS!) I am thrilled that 4 years later my memory has improved and I can access my knowledge…it was scary when I could not remember the word BUS in a conversation…I had to say what do you call those big yellow things you put kids in to get them to school!!!My wonderful therapist said I had forgotten more than most others ever had….soothing…

[QUOTE=Hedley LaMarr]I have met two people who have recovered fully. What is full? They walked into my hospital room to visit me on their own two feet. One had an 8 month episode and the other was 2.9 years. I don’t know what their residuals were and I did not ask. Both were in their fifties. One lady and one man. I’m in my 19th month of illness and using a walker to get around safely because I have not healed from below the knees downward and remain with drop feet. At the end of the day these legs feel no different than the dining room table legs. So I wait and wonder: is this the best I will ever do? My Neuro tells me that the longer you go, the less your chances for a full recovery. I know things could be worse in life, but of course I am just concerned with myself. Should I feel guilty about that? I don’t think so. I hate this illness and my heart aches for those worse than me. I have given up the anger because it saps your energy: a word of advice to others. And self-pity can pull you into a dark hole. It is a trick to stay buoyant, a balance between being grateful for other things and saying to yourself “it could be worse” which is solely your personal province to say. Meanwhile, I thank you for your answers to my question?[/QUOTE]
Wise words Headley. I agree the anger will get you NOWHERE. And nonsense to feeling guilt for showing concern for our health. I miss good health because of the things I want for myself, but also for the things I could do for others. Plenty at stake when it comes to our health.

Boo to the Neuro!!! A**hole should never have told you that. I agree with Carolyn, fight the good fight. I was told that my hands might have long term residuals by PT [B]and[/B] that they would be fine by my neuro. Who do I choose to believe?

My guitars are not for sale because I refuse to believe that I will never be able to play them again. Django Reinhardt was one of the best (and fastest) guitarists of all time and he could only use two fingers on his fretting hand because of deformity. And Tony Iommi from Black Sabbath sawed the tips of his middle fretting fingers off in a woodshop accident. He made some wooden prosthetic fingertips and went on to create a totally unique guitar sound. This was forty years ago and he’s still featured in current guitar mags. Should they have not bothered to play?

Dude, I would rather accept blind folly then surrender to this.

Never say die.:cool:

Full recovery? Just to think about it is an amusing one for me. Just I have written in my reply in another thread, though you can walk, talk, eat, run and do all normal things, there are some times, you are down for some minutes or hours. Take rest and start doing your normal activities again.
I now know some of the patients here in Mumbai (India) in my city, who have had the GBS. Everybody complaint about something frequently. My words for those, are the same, please have some patience. It will fade away automatically but it may come back without any warning too. Try to neglect it as far as possible. Once you got GBS, you cannot run away from its left over.

“I think you will see this typically Sloooooow recovery will continue and continue. It sneaks up on you. So my advice is not to look for improvement….just go along living your life…grateful for being out of the hospital. Grateful for all the little things you CAN do. GBS teaches us to live in the Now…very Buddhist.”

For most of the time that I have been sick, I have not noticed any improvement unless I look back. It often feels like I’m not moving at all. My parents saw me when I was leaving rehab and I didn’t see them for another 2 months. Then they just raved about how good I looked. So what Carolyn wrote above struck me. I had been feeling stuck lately, thanks for the advice about not looking for recovery.

Mark, glad to be of assistance…I know it is hard to believe that one day you will be recovered…..but you will…especially since you are young and caught it in time. When I was on the floor those 4-5 months, I could not imagine how legs could hold people up…I was obsessed with watching legs on tv. Plus I did not have Physical therapy..unless you count scooting and crawling! Funny. Sometimes I get flashbacks and I look down at my legs and am amazed they are working!! Imagine how flamingoes must feel!!! JUst remember…..no expectations….it’s like waiting for the phone to ring….as long as you sit and wait, it doesn’t happen. Einstein never covered that topic…wish he would have!!
Sandeep, I enjoyed your imagery- it reminded me of a computer…to be down for a few minutes or hours….gotta reboot…..and I liked your use of the word “leftovers” It is like a meal…”I had GBS with a side of Leftovers!! Not going to order that again!!”

Carolyn,

Thanks for your kind words. But am sure you would be much better tomorrow then today. I have seen three/four patients in my city; they all become 60 to 90 percent normal (?). Of course, age also plays major role in recovery. One of my colleagues (age around 31) was totally paralyzed below waist within three days from the onset of GBS. He and his family were very nervous during those days. In fact I became a role model for them. I told them my condition when I was in ICU/hospital and how I am today.

After one/two months with the help of physiotherapist he started walking. Even he also drives his car and also comes to office on bike for about 8 kms daily. He, like me, also has to face different types of problems on different days.

I would, therefore, repeat. You please read your body on daily basis. You will find you are better today then previous day.

Sandeep,
I think looking for DAILY improvement with GBS is like watching a plant grorw…frustrating. It also gives too much attention to it. We need to divert our attention so your remarkable body can heal itself. There was never a day in the past four years that I was “much better today than yesterday”…a teeny bit better but not noticeable.But it did eventually happen!
You are right that Age plays an important role…..I would like to add Attitude and also Additional supplements that give the body what it needs to repair….since it is impossible to eat all the foods we need for each vitamin and mineral.
I am a Spirit living in this vehicle/body and doing my best to keep it running well. And what’s a few “leftovers” after this horrendous experience/GBS!
Namaste

[QUOTE=Hedley LaMarr]One day I dreamt that I was well and started to get off the bed, but stopped when my feet touched the floor……..Each day I wonder if I will achieve full recovery or fall into that statistical group of those with deficits of one kind or another……. Until someone tells me “this is the best you’ll ever be” I will continue the good fight. I came back from full quad paralyzed within seven days to using a walker. When I get down, I look over my shoulder and see how far I have come. And that gives me strength to keep going. I had a one foot tall sign in my rehab room on the wall. It had only one word: PATIENCE. I thank you all for your input.[/QUOTE]

I have those dreams all the time, I’m glad I’m not alone. There are also many reminders through the day when we attempt easy pre-GBS tasks. Patience is a security blanket.

Thanks for your optimism today Hedley, I need it.

I believe I did make a really fast recovery. I went down hard and fast on August 3rd, 2008. Full ventilation, eyes lubricated and taped shut for 10 days. I didn’t respond at all to the IVIG series, but I started moving my fingers a little after the first treatment. Fast forward through learning how to walk and talk again and they kicked me out of rehab on September 22. Happy anniverary to me! I went back to work full time on October 13. I’m a field engineer so it gets pretty physical sometimes. I have no physical limitations. I have a little “weirdness” in the right side of my mouth when I get tired. Kind of puckery. Same with the right side of my eye. My toes feel like the last five minutes before a novacaine shot wears off. I can feel them fine, but they feel tingly if I touch them lightly. I play in sports, surf, kayak, paddleboard and run. I can’t compete like I used to because the stamina is just not there anymore.
So where am I in my recovery? 95%? I’m not sure and I really don’t care because like you all have said, compared to where I was I can really handle this little stuff. Now it’s two years later and the mind does a really wonderful job of buffering you from really bad things. Kind of like a bad dream. I really pushed during my recovery. I always had doctors say don’t push it from a sports injury, but my coaches said BS! Get back in there! Same way with the military. And it worked. So when the neurologist said don’t push, I pushed. I remember the PT’s said to try and do 100 theraband reps during one particular weekend. I lost count after 3000. Of course I only had 3 TV stations and they were all locked onto Divorce Court so what else was I to do?
I ordinarily don’t jump into the forum because I got so better so fast. Many of you have had it so much worse than me I feel I can’t really lend any support, but this thread was about fast recovery so here I am. I would be happy to help anybody in any way I can. This is a really great forum because of the level of support we can give.
Do not ever give up. Ever. Every single day you are getting better. You have to focus on that and think about where you were. That’s what I always do and it makes me really greatful.
Cheers!
Johnny Mac

[QUOTE=Johnny Mac]I believe I did make a really fast recovery. I went down hard and fast on August 3rd, 2008. Full ventilation, eyes lubricated and taped shut for 10 days. I didn’t respond at all to the IVIG series, but I started moving my fingers a little after the first treatment. Fast forward through learning how to walk and talk again and they kicked me out of rehab on September 22. Happy anniverary to me! I went back to work full time on October 13. I’m a field engineer so it gets pretty physical sometimes. I have no physical limitations. I have a little “weirdness” in the right side of my mouth when I get tired. Kind of puckery. Same with the right side of my eye. My toes feel like the last five minutes before a novacaine shot wears off. I can feel them fine, but they feel tingly if I touch them lightly. I play in sports, surf, kayak, paddleboard and run. I can’t compete like I used to because the stamina is just not there anymore.
So where am I in my recovery? 95%? I’m not sure and I really don’t care because like you all have said, compared to where I was I can really handle this little stuff. Now it’s two years later and the mind does a really wonderful job of buffering you from really bad things. Kind of like a bad dream. I really pushed during my recovery. I always had doctors say don’t push it from a sports injury, but my coaches said BS! Get back in there! Same way with the military. And it worked. So when the neurologist said don’t push, I pushed. I remember the PT’s said to try and do 100 theraband reps during one particular weekend. I lost count after 3000. Of course I only had 3 TV stations and they were all locked onto Divorce Court so what else was I to do?
I ordinarily don’t jump into the forum because I got so better so fast. Many of you have had it so much worse than me I feel I can’t really lend any support, but this thread was about fast recovery so here I am. I would be happy to help anybody in any way I can. This is a really great forum because of the level of support we can give.
Do not ever give up. Ever. Every single day you are getting better. You have to focus on that and think about where you were. That’s what I always do and it makes me really greatful.
Cheers!
Johnny Mac[/QUOTE]
Your post should be required reading. You rock Johnny mac!

Johnny Mac –

Way to go! In my best time I couldn’t do that many theraband reps, or did I ever think about doin so. But I did spend one very long weekend in rehab writing my name – over and over. Kind of reminded me of grade school – – but I now have an almost pre GBS signature back. I think it is good for us all to read each other’s stories, because the good ones make us feel so good that someone out there “beat it”. I’m still working on the recovery issue, and suspect I will for some time. Yes, it is like watching a plant grow, but someday there will be a flower there I wasn’t expecting. I’ve just had a really bad week and as always turn here for support. I get it from all of you. Keep posting – keep smiling.

I don’t know how to quantify the longest – many great posts here relate to “Almost” being 100% full recovery……that’s the category I believe I would fit in.

I’m able to do almost everything – my wife and I built our home together last year, with the majority of the work being done by ourselves.

The first time I had GBS in 1993 – I was 18, I remember recovering fairly quickly (all relative to the latest incident with GBS) and I went back to playing intramural sports fairly quickly.

I did want to throw out that I had a pulmonogist (sp?) tell me about a young man in Cairo Egypt that was Dx’d with GBS on a Monday. He received IVIg treatment on Tuesday and Wednesday. He started on his soccer team on Thursday and scored goals just the same as usual. I thought about that young man, that I never met, often while I was in the hospital. That’s probably the fastest that I ever heard of.

I am new to this Forum and very happy to know that this site exists.
I contracted GBS in May of 2009. It started out as a sore throat that I ignored for a couple of weeks. On May 17th I noticed that my hands and feet were hurting, like an artritis type feel to them. The next day I woke up and both hands and feet were numb and my throat was still very sore. I went to the hospital and they dismissed it as Strep throat, gave me some pills and sent me on my way. Within 12 hours I returned to the hospital and told the doctor I was very worried, I had never felt that way before. He quickly diagnosed me as having a panic attack, prescribed me xanax and sent me on my way. I went home, still unable to swallow any pills and more gbs symptoms setting in. That night I knew that something was definitely not right and decided to go to a med clinic instead of the hospital. At the med clinic the doctor there actually listened to the symptoms I was telling him, made a phone call and then sent me to another hospital. As soon as I arrived at the other hospital I was seen, by this time I could no longer walk without assistance and my respiratory system was shutting down. The attending doctor made the correct diagnosis and I was admitted and on a ventilator within an hour. I ended up being on a ventilator for 2weeks and in recovery for a couple of days. I was very lucky. Most of my symptoms wore off very quickly after I left the hospital. In total I missed 3 weeks of work and returned as soon as I could. I still had light symptoms for a couple of months, very weak in my right arm and slight numbness in both feet, but made a full recovery.
As of now there are no signs that I ever had GBS and I am very thankful for that.

Logan,
Welcome, sorry you had to get GBS.
GBS hit you fast and hard but you made a very fast recovery. It’s good you have no signs of ever having GBS but since your GBS was so recent you should not overdo it. Rest as much as possible even if it is for short periods at a time. Come here to vent or ask questions.
Best of luck to you.
Shirley

Hi Heady,

Your pseudonym reminded me just now of the absolute worst time I had in the hospital. I had just been woken up from intubation, laying in an ICU torture bed (all hospital torture beds suck!) and I can’t make the darn remote work. The TV is stuck on AMC and there’s a Mel Brooks marathon. The first movie is Blazing Saddles, which isn’t terrible and it goes straight down hill from there.

Take care,

Mark

hey brett and logan

keep spreading your faith in recovery! many in the GBS acute phase need all the positive posts they can read…you prove that there is hope for many who can still believe they will get back to their lives with negligible residuals

hope everybody had some good vibes today, keep grooving!:)

Thanks to Carolyn for her analogy of nerve repair being like waiting for a phone call. We can’t know if a nerve is repairing itself until it ‘rings’ and lets us know with pain or increased strength that it is indeed better. Remember Schrodinger’s cat in the box – either the cat is alive or, because of the random decay of some atomic particle, dead. The observer can’t know until they open the box.

I suppose I could let a surgeon go in and take a ‘nerveopsy’, but that would pretty well kill the nerve from that point onwards. What most of us have to do is wait to see whether the nerve is alive and hope that when we open the box, all our nerves will look up, say meow, stretch and walk out of the box.

I’m going on my 2nd year now and it’s been a fight. I used a walker for several months but while using it I started taking little trips with out it.
My legs still feel rubbery but it is a fight.
I no longer use a walker, I still have severe numbness an tingling.
It is a fight.
all I can say is baby steps and slowly increase your distance

i was hit hard and fast – 24 hours from first symptoms (pins and needles in hands) to seeing a neurologist and diagnosis – 48 hours to full paralysis and intubation / induced coma. believe given the severity my recovery was fairly quick – only 7 weeks in hospital including 10 days of rehab. When i went from ICU to the ward (after 4 weeks) i couldnt stand so went from not walking at all to walking unassisted within 3 weeks.

i took about another month at home to get my vision back (had Miller Fisher with facial nerve involvement, double vision etc) Went back to work less than 6 months after coming down with GBS and that was giving myself an extra month or so to make sure i was ready. It is now 4 1/2 years down the track and i rarely even remember i had GBS (can even see past the monster trachy scar these days and forget it is even there) can honestly say I made a 100% recovery with no residuals whatsoever. Even the psychological scars disappear with time!

I know not everyone will make it back to where they were before GBS but if it can happen to me it can happen to anyone.

I went to see my neuro in early January, my symptoms were down to numbness in the souls of my feet and tingling in my toes. He told me he didn’t want to see me again, unless it ever got worse. He gave that a 2% chance. It’s been six months since diagnosis. I’ve been back at work for three months.

Take Care,

Mark.

I am back to normal mobility. I run with my dog during part of his morning walk. I’m back to taking the stairs and when I walk I stride the same way I did before. The one thing I did the whole time, not just the recent health changes, but the whole time was following an exclusion diet, excluding several things like sugar, meat, dairy products, caffeine, wheat… I believe that the diet helped me recover so fast.

My remaining symptoms are tingling and numbness in my toes and the soles of my feet. My Neuro said that the longest nerve leads to the large toe and the symptoms should leave there last.

Thanks for all the support and phone calls along the way.

Take Care,

Mark.

The longest recovery could be many years. In my case, I am now in my 40th months since the onset of GBS and am still seeing improvement in my legs. I had a long way to go as all my muscles vanished during GBS. I have been fortunate enough to be able to exercise just about every day, but boy oh boy are the gains taking a long time. Anyhow, I am happy to say that I am fairly competitive again in doubles tennis, but am looking forward to continuing recovery to being able to cover the court well enough to play singles.

Hi Folks! Nine months ago my neurologist said I was as “recovered” as I would ever be. I bought Garry Parry’s book. Based on his recommendations I exercise 3x a week. I am 42 months since onset, and I have noticed continued improvement the last 6 months! One leg and one foot left! Still hoping I reach “complete” some year!

I don’t get off the ‘treadmill’ until it’s time to crash, since I get up with the dog each morning at 5am. Well work is going well, I try to take lunch, but sometimes I work straight through, no rests. If I do take my lunch, I go to the gym for an hour and practise Tai Chi. I’m pretty back to my old schedule, though I hardly stay up late watching TV. So no late night TV. Other than that… I kept using my handicapped parking to the end, at work it saved me a five minutes walk. My work hours are 8:30 to 5:30. I work at a desk and don’t have to lift anything heavy. The office is big and can take 5 minutes to walk to the furthest end. I still have neuropathy in my toes and that half of my feet. The dog reminded me of that when he ran across them with his claws. It seems I like the heat turned all the way up this Winter. Its also funny how different parts of my body can “Fall Asleep” with my weakened myelin. One time I sat wrong and I went numb from my navel to my thighs. That was really weird. Not completely asleep like before diag., but mostly numb. Plus when it woke up, it didn’t hurt like before, silver lining?

Anyway, keep your sunny side up!

I guess I am one of the longer recovering on here. My symptoms started in December of 1998, and I still have foot drop, tingles, and a crazy fatigue. Eighteen years later I’m still trying to make a comeback 🙂

I just have to say keep working hard, keep hoping, and never let them write you off. Although it is very slow I have seen improvements in my feet!

Live life in the now, and keep moving forward. Stay strong! ♡