Even though I had the cytoxan in 2003, I did not make a full recovery. I have mostly numbess & a lot of nerve damage below the knees, must wear AFOs to walk & suffer a lot of foot pain. My hands are not normal either, partial numbness & no fine motor, writing is still difficult, as are buttons, zippers, sewing a button. I can walk with a cane, but with very weakened knees & hips; I cannot bend down to pick something up. I suffer a lot from fatigue on a daily basis, must sleep about 12 hours to feel somewhat normal. That is the reality of what CIDP has left me with.

But you will rarely see me come on this sight to complain about my residuals. I accepted where I am at a long time ago & live what I consider a very good life. How excited I was to get my driver’s license back in 2005, to start walking again in 2004 (albeit with two canes & AFOs,) when I was able to start using my hands again partially after 2 1/2 years. I have accepted my limitations, it just got to the point where I had no choice. I lost my teaching job & all of my sports, but I moved on & made changes. I no longer downhill ski, skate, take walks (just to take a walk), play tennis, etc. But I am very involved with water aerobics, can still drive a snowmobile, get up to our cabin, cruise in our boat, & we do travel a lot. I do not believe I let this illness destroy me, when with friends I prefer not to talk about it at all. That is not what they want to hear, they want to hear good things.

I believe that that is one of the major purposes of this forum, to have a place where we can vent if we need to. Or to help out the “Newbies” as they come on. I am happy with life & after having such a severe case of CIDP, it is really a miracle I am still here to enjoy life. Dr. Parry calls me his miracle, that makes me happy! Now, I must go & get ready for my water aerobics class, which I have been in for over 5 years & no one cares that I must use a cane around the pool & also wear my AFOs.

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 !:)

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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

Hi Joanne,

I was diagnosed with CIDP March 2008 and started IVIG April 2008. I am now very functional, although far from being back to normal. My arm strength has pretty much recovered. Last year I could not raise my arms above my shoulders. My husband had to help me dress and even get my clothes from the rack in the closet. I could not hold a hairdryer over my head.

As I said my strength is back in my arms, but the end of my fingers still tingle like frost bite and my right hand and arm soemtimes throb. My legs have not regained their strength relative to my arm strength. But again, I am quite functional. Initially I lost leg strength then arm strength. So, recovery does seem to be in reverse order.

I did not start improving until I cut back on my work schedule and took naps most days. I think to recover one has to get plenty of rest. I took naps for about three months. I started feeling like I was on the road to recovery after 7-8 months of IVIG.

I found that the use of my arms and hands allowed me to feel more in control of my life. I hope to regain all or most of the strength in my legs, but I seem to be able to work around that. I try to navigate on smooth surfaces and avoid stairs when possible. Most people can not tell I have anything wrong.

I hope this gives you a little hope. I know I had thoght after three months I would be well. But, it is taking a little longer.

I wish you a quick recovery.

Donna M

Hi Ron,

Great to hear you are getting along so well…I was wonderin if those anti embolism socks (like the one your hospital gave you ), would help with the cramping, as I too had that prob.. I think my feet cramp worst at nite when I lie on my back or belly for an extended time… Also, I’ve found puttin a pillow between my lower legs/knees has helped with my issues…

Things are rolling along pretty good for me as well…Its been about 5 months since this stuff came on, and aside from fatigue, and some numbness in feet/toes, and a little in hands..I guess no complaints..take care deanop

Hi Tom,

In 1995 I had a mild/moderate case of GBS. It took my doctor a couple of months and a spinal tap to diagnose me with GBS.

The hardest part for me was the fatigue. Next was the tingling of my arms and legs. They also felt like they were on fire.

To make a long story short, it took me eight months to where I could go back to work part time. It took that long to where my arms and legs started to feel somewhat normal again.

Several years ago I was diagnosed with CIDP. Several times a year I get relapses. Some mild, some moderate. I have learned stress plays a big factor in these.

I have to admit when the relapses happen, I still get very scared and hope it’s not a repeat of 1995.

That’s my story in a nutshell.

Greg

I wish to thank you for your inspiring story. I wish the doctors would keep their mouths shut about the length of recovery! I would say 1-2 years is doing well; I think you have done exceptionally well to be where you are after only a year. It sounds like your recovery was complete. How I wish I could throw away the AFOs, cane & power chair I still use for part of the day. But after 5 1/2 years, I know I am as good as I will ever be. Be grateful for the wonderful recovery you did make, & try to learn to appreciate what so many take for granted, it sounds like you were one of the lucky ones…
Pam

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!
Al

I had CIDP rather than GBS, but still spent 2 1/2 years strictly in a wheelchair. I was able to go home because I could transfer from my bed to my power wheelchair by myself, & my husband lowered our bed so I could transfer into that as well. I didn’t really receive any PT after I got home. Well, at first I did have a PT come to the house twice a week, but we soon realized it was a waste of time for me, as I was still deteriorating at that point.
Anyways, I did begin walking again after my CIDP was arrested & I had some nerve regeneration. People always ask when they will walk, I believe the easiest answer to that is when enough nerves heal. Your brain seems to know when you are ready, no matter how long it has been. I walked long before I could crawl, which seems weird now. But just be patient, get tons of rest/sleep & you will know when you are ready.

[QUOTE]The textbooks say that 80% of patients with GBS make a full recovery. Maybe they do, & they are out working full-time & leading normal lives. We usually do not hear from them, maybe one or two posts to tell us how they are back to normal. There is usually something included about how they always had a good attitude & that’s why they recovered. Or about how hard they tried? Like there are those that don’t? Anyways, my point is that not all make the great recovery that we had hoped for, but that it isn’t our fault.
[/QUOTE]

i am one of the ones that have made a full recovery (give or take a few minor residuals but nothing comapred to what you guys have described here. I just wanted to let you know that i agree that it has nothing to do with how hard you try .. or how fit i was before gbs (not!!!!). Or even how many people you have praying for you. Yes i worked hard to fight this bloody illness but dont we all. It is just the roll of the dice how hard you are hit or how quickly you recovery or to what degree. People (including my doctor)often ask me if i ask “why me” why was i the 1 in 100,000 to get this but to be honest that never crossed my mind. I do often wonder though why i was one of the lucky ones to get better so quickly.

I understand how frustrating it must be to hear people say – it was my will to get better that did it. It is such a fine line between working your guts out to get better and overdoing it. I sincerely wish everyone could have the recovery i did but i know that is not the case. I try not to rub peoples noses in it, but i also want to give people hope that recovery can happen. If i ever say something that upsets a fellow GBSer i hope someone will tell me to pull my head in;)

Dear Erin,

At this time, there isn’t a doctor in this world that can tell you when, or exactly how well your father will respond to this catastrophic GBS attack. It depends on his will power, his drive to improve, faith, positive attitude, and family support.

When I got GBS I was already on disability with my back. I had degenerative disc disease, osteoarthritis, spondylothesis, back surgery in 1974 that was unsuccessful, chronic adhesive arachnoiditis (a disease of the spinal linings and nerve roots sticking together from scar tissue – caused by the contrast dye used at that time…Pantopaque). I was misdiagnosed, and did not receive IVIG or plasmapheresis.

There is another thread I would like you to read:

[url]http://www.gbs-cidp.org/forums/showthread.php?t=1341[/url] Read all post.

Wishing your father, you and your family the best.

Jethro

Dear Erin,

At this time, there isn’t a doctor in this world that can tell you when, or exactly how well your father will respond to this catastrophic GBS attack. It depends on his will power, his drive to improve, faith, positive attitude, and family support.

When I got GBS I was already on disability with my back. I had degenerative disc disease, osteoarthritis, spondylothesis, back surgery in 1974 that was unsuccessful, chronic adhesive arachnoiditis (a disease of the spinal linings and nerve roots sticking together from scar tissue – caused by the contrast dye used at that time…Pantopaque). I was misdiagnosed, and did not receive IVIG or plasmapheresis.

There is another thread I would like you to read:

[url]http://www.gbs-cidp.org/forums/showthread.php?t=1341[/url] Read all post.

Wishing your father, you and your family the best.

Jethro

Hi Stephen.

I hope your grandson gets well son. My son is 22 months old and has a bad case of GBS. He has been in PICU for 2 weeks. We have a long road ahead but feel confident he will be the boy we knew before this all. I wish your grandson well. Recover he will. Time it will take. Thanks. Paul

John,
I am recovering from GBS that was diagnosed on May 25, 2006. You were concerned that you are not able to go to Chicago to be with your Mom until September; do not worry; your Mom will still need you then as well. Recovery takes a while, I’m told. So, let your siblings take the first several weeks and then they will be glad to see you in September when you can get away from your work to be with your Mom.
Take care,
Brenda

I am just past my one year anniversary. I was paralysed head to toe. I am now doing great. I am almost 100%. Not quite. I still get tired easily, the heat of late has really gotten to me, I still feel weak in the knees sometimes, and I still have trouble with my feet. But, I am still improving. Don’t get discouraged. It will take time.

Tonya Correll

Hello Annie,
It doesn’t happen to everyone, but, YES THERE DOES SEEM TO BE A RECOVERY. I have been off ALL medications for 2 1/2 years now and though improvements come like a snail moving, I am improving. I have shown no sign of a relapse. I am at a point where I don’t need a neurologist. When you have stopped progressing, myelin can re-grow and when this happens you heal.
I am a very cautious person and I silently observed myself for a year before the IVIG’s were stopped. I realized during that period that I didn’t relapse, I never got worse and though my neurologist was great and familiar with CIDP, I went into New York City to see another highly qualified neurologist. The two consulted and my neuro decided to withdraw IVIG’s completely.