Does anyone actually recover 100%?

I started recovery within days of you. I did not need to be put on a ventilator but was affected from from head to foot. I am looking forward to 100% recovery but also am aware from the forum that 100% may not occur. I am walking with a cane and working 3 to 5 hours per daydepending on my physical activity. I still very tired and need a nap or two. I am hoping that those people who do attain 100% recovery do not come to the forum and that is why we do not hear their stories. Hope you are on a good road to recovery and I wish you the best

January was 2 years since I was 1st hospitalized. I had a very severe case of GBS, in and out of ICU, trach, paralyzed head to toe. I am still getting IVIG every month. I honestly cant imagine ever going off IVIG b/c it does seem to help. My feet are just not right still, I am numb, cant feel temperature right away. The left side of my face still seems numb too. I really want to know when that will go away. Can I do any excercises to help that?

The first time I had a mild case of GBS back in ’86 and recovered 98% (I hate to say 100%) because my body is the only one that knows that. When I got it again 20 years later, it was not mild. Could not stand for 4-5 months. But thanks to my wholistic ways/supplements, I did not have any IVIG and did not go to the hospital. (Actually did go to 2 Emergency rooms, but realized they had no idea how to treat me. They would not do IVIG because I could still hold a cup!So I left..it was the best decision.) I have not had any need for pain killers and still some numbness in my feet. I think it does damage to our bodies like getting struck my lightning….we recover and are grateful for that recovery, but it leaves weakness there. PLus we do not know which symptoms are from the GBS and which are from aging. I miss my memory the most. My therapist tells me that I have forgotten more than most people ever knew…which is kind of him to say that.

Carolyn –
Getting struck by lightning – how right you are. We know how we feel, those close to us also kind of get it. Friends and family who do not live with us are kind, and wonder when we’ll get back – and why it is taking so long. They don’t understand. Collegues wonder why you’re still off and suspect you’re taking an extended vacation. GBS stinks and is life changing. I am so sorry to read about your re-occurance. I want this to be over and to never come back. I don’t care if I only get 80 to 90% back – I just want it to be over. But I am learning from all of you that we are in this for the long haul, and need to learn patience. It is humbling, and I am thankful I have a wonderful husband to support me. And my faith to keep me together.

Cathie,
Glad you liked my analogy of lightning. You are less four months into recovery…you still have more time for your body to heal. Since you were hospitalized for 2 months, it sounds like you did not have a mild case. You are correct in people not realizing how bad GBS really is. It’s nickname is French POLIO. If we used this term, more people would give us some slack!! I am so grateful that I did not read this term until I was on the road to recovery…it might have panicked me and I would have allowed them to admit me to the hospital. So when they say that President FDR had polio, they are right in that he had French Polio – GBS. (researchers reviewed his case a few years ago and discovered this.)
GBS is a syndrome which means they cannot put their finger on what causes it. IF you go back and read some of the old emails, you will find that people got it from a vaccination, or after quitting smoking, or running a marathon, …what they all have in common is that we over taxed our bodies. Mine was from stress – five years of taking care of my mom while teaching plus ushering at a Performing Arts center…I tried to do it all….then she died …so it is like juggling…..when you have too many balls in the air, it’s all going to come crashing down…..voila..GBS….with some it is an immunization that is the final ball…..mine was tomatoes….it overloaded an already overloaded system…my right foot was getting numb..(tomatoes and potatoes cause arthritis in many people)
You are lucky to have family and friends…..I avoid all prescription medicines since many have bad side effects……I do not want to start another juggling situation!

Carolyn –
What an informative post! I did not know about FDR – always thought it was polio, but GBS makes so much sense. I had an 8 hour spinal fusion in May ’09 and then in late July had a significant screw in that fusion come loose. Aug “09 saw me back in the OR for another 8.5 hours – a total rebuild of the fusion. (the whole thing initially was to repair a scoliosis corrective surgery from 1975 which saved my life and had held for almost 40 years) I was pretty much in bed until the start of November, and then on the 23rd I went back to full time teaching – high school biology. My classes were out of control, as can be expected since they had nothing but a string of bad substitutes, so my days were tougher than usual. Big surprise – about 2 weeks back my legs started tingling, then worse, and worse. We all thought it was related to the spinal surgery – I was so upset, I just couldn’t face any more back problems. Legs got worse, then Christmas morning I woke up with only 3 fingers moving, and a very horse voice. We were out of town at Moms so drove the 2 hours home to our local hospital in Tucson. 3 days later GBS dignosed and PE every other days for 10 days. Never a vent, though they discussed it. 2 months in a rehab hospital and now home – walking with a walker very slowly and having exhaustion if I do anything except sit and watch tv, or read. I still take 2 naps a day and sleep 8 – 10 hours at night. This really whomped me. Mostly I am pretty “up”, but yesterday was all day in bed and pretty down. I am better today – I will probably walk around my back yard and look at my poor, bare garden and promise it that next year we’ll plant again. Too much work – and I can’t even imagine getting down on the ground. I have no idea how I’d get up! So patience is the name of the game. I sure wish the pamphlets we got didin’t promise 100% recovery by 12 months – 90% by 6. My husband believes that to be true, but I don’t see it.

I am so sorry this has gone so long – sometimes it just helps to unload. Thanks to all of you who have taken the time to read this, and sympathise. I am so grateful for this forum! 🙂 🙂

I’d say that in the 2 years and 5 months I’ve had GBS-CIDP, I’ve recovered about 50% of my former strength and physical ability. Last year, I would have said I was at 30%. So I know I’ve made improvements. My feet aren’t as bad as before, though I have to watch out they don’t get cold or over-worked or pressured. Most of the pain in my skin is gone, though I still have more sensitive times with this problem. Some of my upper body strength has been regained, but lower body is still very impaired.

My short-term memory is better, but still not what it used to be. My speech is improving steadily, eyesight is much worse than before GBS. Hearing is almost back to normal, but still can’t tolerate loud sounds without going into a full-body nervour-trembling reaction. Dizziness and headaches have diminished greatly, with some reoccurences. Hair grew back; nails still irregular. Lots of gastro-intestinal issues keep happening. Heart is weaker than before GBS. Lungs are weaker. Still get severe cramping in muscles, but less than during onset. Balance is still poor, though improving slowly.

Weakness in all my muscles is prevalent, no matter how diligently I take my daily walks, climb my 2 stairways in my home during routine daily activity. Can lift only a few pounds, otherwise muscles give out and I get angina pain. This whole GBS-CIDP condition has been a severe strain on me, daily living and earning my livelihood, but I persist, because I have no other choice really. Still keep having set-backs, but just keep on keeping-on. It’s aged me at least 10 years. I have been unable to regain my former athletic physique and activities.

The neurologist who said that people recover 100% obviously doesn’t know much. But I’ve said it before, if more medical people got this condition, they’d soon change the ‘information’ they give to the public in their GBS pamphlets.

Cathie,
My GBS brain did not compute correctly how long ago you had GBS…so I went back and edited my first email. It is barely four months… how would you treat your recovery if you were getting over polio or lightning? You owe it to your body to give it what it needs to repair…starting with naps! Just ignore your progress and Know that it will happen. Baby yourself. I can see why you came down with GBS…operations and then going back after months of substitutes… YIPES!! I taught 7th grade LIfe Science and then Gifted Math/Science in a middle school.
I ran into a former student who volunteered to help me put air in my tires when the machine wouldn’t work. When I told him who I was, he paused in surprise for a few seconds and then held up his little finger. It had been cut off close to the first joint and he said that I had told him (30 years ago) not to worry, it would grow back – no problem. He showed me that it did!! You could not tell the difference.
Now I remember when I taught about regeneration in Invertebrates, I said a female doctor in England discovered that up to age 10, a finger will grow back…but closer to age 10, the results are not as good. BUT what is interesting is what he HEARD..that it would grow back….and his body responded…. So expect your body to repair itself…and it will. His finger grew back perfectly… 100%….your body will also… relax and let your body do what it needs to….and stop watching for progress…(a watched pot never boils….a phone doesn’t ring when you sit waiting for it to ring….GBS follows this quantum physics principle!)
Luckily I had saved up half a year in sick days and the sick leave bank covered another half a year. But then I retired early….my students were great…but the administration put too much stress…..so now I put my bodymind/spirit FIRST….

Carolyn –
Yes, I am an overachiever – and an overdoer. I promise I’ll nap, and not feel apologetic about it. My bio background knows my cells need time to heal – especially those neurons!

I saw my neuro today who said I was ahead of the curve on recovery, most likely due to my committment to my PT and determination to recover. But he cautioned me to take it easy now that I’m feeling better – in other words, nap, let the housework go, and chill out a bit.

Okay, I’ll try. GBS may change me in unforseen ways – I’m not even making the bed every day! See, success. 🙂

Hi Cathie
Just wanted to shed some light, last summer, shortly after my DX of CIDP
I remember pushing myself, refusing to believe I had “this thing”, total denial
was I. I remember pushing myself because I thought “God forbid if I took
care of myself and not my garden, my flowers would die and all my hard work
would be for nothing.” So, I pushed, pushed and pushed some more. Then,
one day when I was on all fours in my flower bed, I relized, I couldn’t get up.
So… I crawled over to my arbor and could barely pull myself up, it took all
the strenght I had. I started to remember 2 years prior when I shovled a
whole truck load of mulch by myself in 90 degrees humid weather and then
I just sat there and cried. I finally accepted “that thing” and relized I had
better start taking care of myself. I took advice from the people in this forum
and I’m so ever in their debt. They taught me so much, about my CIDP, and
feelings, emotions, friends and family, education, just everything!! And I love them for it. Just stick around and read all you can. My flowers will bloom this year, I asked for help and it was everwhere. Hang in there Cathie, you’ll have good and bad days, just remember we are all here for you.

I was diag with gbs 12 aug 08 I spent a month in hospital and started rehab 2 weeks after 5 days of ivig. At that stage i was in a wheelchair . At rehab lying on my back and trying to move my leg an inch off the floor was a mammoth effort and took every bit of energy i had. Im sure everyone here knows about the exhaustion that is with you 24/7 .Anyway now i use one crutch when out and about ,i can walk without it but my balance is still a problem, no reflexes in ankles. and i trip easily. The fatigue is still there but not as severe,memory is still a problem, trouble swallowing at times ,muscle cramps ,static in my vision,tremors in my hands mostly when tired or stressed.trid to run but cant seem to launch myself of the ground (ha ha ) i do 2 hours rehab a day and i think that plays a huge part in your recovery.i used to go for an hour walk every morning before gbs so my goal is to do that in the future. its important not to give up and to keep believing you will get stronger. gbs knocked me flat but in some ways im stronger for it . And you gotta keep your sense of humour .Keep positive everyone .

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From the perspective of someone who had GBS 47 years ago, when I was 24, I must say that I believed that I recovered fully, as I believed that everyone else did as well. The Support Group here, which has been meeting since 1992 taught me many things, including the fact that no one probably recovers completely. If I could go back through the years of the early 70s and 80s, I think I might discover that I wasn’t as “better” as I thought I was. When you believe that everyone gets better, you attribute problems to other causes or an unknown factor.

Since having GBS in 1963, I have had three sons, worked both full and part-time as a social worker, and also experienced surgeries for a rotator cuff problem, a foot problem and breast cancer. Looking back now, I can honestly say that GBS was a gift, very well disguised. I volunteered for a committee at the International Foundation in 1997. As a result, I have friends all over the world (literally), I have learned a huge amount, I have been able to assist people by email and telephone contact mostly, in Canada and the US and I have participated in all the Symposiums since 1998 as well as attending meetings in Philadelphia during the in between years. The benefit to me is much greater than that because of what I have learned about myself, about life with limitations, and life, in general. I wouldn’t trade my experiences for the world.

What a gift! Maureen

I have met other people who had severe GBS like me at about the same time (in Oct 2007). All of us have recovered at different speeds and to different levels of recovery. One is still in a wheel chair, while another was walking after just 4 months. Mine is in between but I am very lucky with no major residuals. The one thing I have learned is that the process of recovery is long — much longer than I could have imagined. I was walking without any support after about 8 months following the onset of GBS, but I was not walking “normally” until at least another 8 months more (and I had been rehabbing every single day at the gym or elsewhere)! So the main message is to keep at it, but also have patience. I decided to give up setting goals and instead to be happy about the small progress that I steadily made (and am still making).

I can tell you that I am 55 years old and had GBS in oct 07 and am about 95% back to my old self. One of my close friends had GBS about 10 years ago and the onl\y thing wrong with him or should I say is different for him is a droopy eye lid that isnt evan noticeable unless he tells you about it. I have the bottom of my feet still numb and my toes on the left foot are stiff and a bit curled. Im not done getting everything back just yet!. Wont be long now..
Ron

i had a particularly bad case of gbs. in coma, trach, infections, all of it. drs told family to sign dnr b/c i wouldnt make it back and if I did, I would be brain damaged. ok, so i survived, dont have brain damage, but do have a leg that i have to drag around and drop foot and a hand that sometimes work and sometimes doesnt. i was told the same 100% story which then became maybe you will have weakness, then became, if the leg doesnt come back in 2 years then worry. well, i am worried now. it will be a year in July & I am in pt. I had ivig in hospital but not as out patient, not ever suggested to take it. i am very worried about not recovering the use of the leg and foot. i dont know what to believe but i guess it is just whatever happens to each individual. it doesnt promote a lot of faith in the theory of recovery.

Here in Iceland I know of one person that is 98%-100% recover so yes it is possible to get good health after this. I have not this story from my GBS, and truly I think that is something that have made me a better person, and I have learn to cope with lot of stuff that would had me mad before I got my GBS. My doctor´s promise 100% recover at the time I was in hospital. today they say you are a miracle we never expected to see you stand up from the wheelchair. Why they say this today but not when I was sick, I think it is because hope give you strength to fight back the symptoms. I say it is all based on what we think and what we are going to do. I’m still fighting and I will not give up, I work some days are good others are bad. but what a heck life is worth living and we have so much to live for.

I think some of the information is skewed since the people that have recovered more significantly than some of us, don’t even come here to post as they are not looking for answers. And even if they did, since they have travelled this road they probably know that there’s nothing they can tell us that worked for them that will work for us.

I’ve had 3 people who i’ve worked with have GBS one from my same office, one from another city and one in London and they all fared better than me. I also had an uncle who had it and recovered better.

My case was more serious (that goes with out saying since it happened to me!) in that I was like a number of you hospitalized 3 months (6 wks ICU, trach, infections, blood clots, pneumonia, etc) and they weren’t as incapacitated. I’m left with nerve damage in my right hand and both feet, very similar to what a number of you report.

I still want answers and hope that there can be more research as to a cause or treatment.

PS – my ordeal of 5 years ago, was much more devasting on my family and friends and thank god for them

Thanks Helga, I really appreciate your point of view. 🙂
In my case, I thought that in 2 years you’re all healed, was confused by the medical wording regarding recovery, didn’t understand that they meant that 2years is the amount of time they allot for significant recovery, because after that it’s hard to see any.
But I think that I’ll just go by what is actually happening to me, and I still hope that there is more healing to come after 2 1/2 years of this. As long as I can keep my body functional, so the cramps don’t keep decreasing my mobility. I know that I still see some improvements, and I’m not going to give up hope for more of them.

D.U
giving up is not option for us 😀
xoxoxoxox
Helga

This thread has been very important for me – I am still in the early recovery stage of GBS and reading how each of you has dealt with this has been wonderful. Helga – your words of wisdom are ones I hold on to.