Hi, my name is Ryan Wilson and I got GBS on March 26, 2015. On March 26 I could no longer walk because my muscles were getting very weak and was taken to the hospital where within 3 days I was put on a ventilater and started IVIG. It was hard to see pictures of myself when I was on the vent, I looked so different and druged up. 18 days later I was taken off the vent and sent to a floor bed for a week and then to an acute rehab where I was for 8 weeks. In those 8 weeks I went from using a lift to get out of bed to walking 200ft a day. I started to have breathing issues because of the vent and I had to have a tracheal dilation and it was fixed. On June 12th,2015 I was finally sent home. Ever since then I have been doing outpatient pt and ot and I am slowly beginning to walk with a walker. I spend most of my time sitting or in the wheelchair. This is such a hard journey and I was wondering how long it took some people to recover who had axonal GBS because I want to go back to my senior year a lot better.
hi ryan im laura and im 23 I got gullian barre on aug 24 2014 and got out of the hospital January 2015. I have a 1 year old and I missed out on my sons baby life but they say it takes a year but your feet can be numb forever and you will feel like you have pins in your body!! it really sucks but if you wanna talk more msg me
It would be wonderful if one could tell you exactly how long this will last. Unfortunately, NONE of us with GBS has an exact time as to how long we will need to deal with it. All you can do is take it a day at a time, push yourself to get better, walk, do things that are hard for you and keep pushing. Things WILL get easier, although you might not think so right now. It certainly is a very hard journey, not for the faint or weak. I've been told that the reason it struck me, when I ask "why me?", is that I could handle it where someone else could not have. Count the blessings you have, seek whatever treatment you can, keep pushing and never, ever give up. Don't let GBS win.
Ryan,
I think that one advantage that you have over a lot of other GBS survivors is that you are young. Youth does have an advantage! I was 54 when I was diagnosed with GBS in Jan 2014 (from a flu vaccine received 10/14/13). I did the IVIG and came home on a walker. I have had to do all my own physical therapy as I have no insurance. I am now 1 year 7 months into my recovery and I must say that I think that I am making progress albeit very slowly. I have other conditions that GBS caused...high blood pressure, fluid retention in ankles and feet, very low energy, numb hands, feet and legs and transgeminal nerve pain in both my jaws. I am on social security disability now because I can no longer work or drive my car. But when I have my good days I can walk 1.5-2 miles a day and do running in the pool for 30 minutes. I love water therapy because it is there that I no longer have balance issues. I still cannot get off the floor should I fall. I have made progress though and will continue as I am not a quitter. I also remember that GBS can also mean getting better slowly which is right in line with me.
Takes about a year good or bad. Keep fighting as you will recover.
Hi Ryan
Wish I had the answer to your question. Many of us or I imagine all of us have asked the same question. You have an advantage over a lot of us because of your age. I was 69 when I got GBS in May 2012. Was admitted to the hospital on June 4, 2012 and did not come home until October 12, 2012. . .129 long days. I still have a lot of problems with my feet and legs, but like I said I am older and I do have osteo-arthritis so not sure if all is GBS or not. However, I am back playing the piano, driving and doing most other things. I just can't walk or stand for any length of time. But the main thing is not to ever give up. I was determined that I was going to walk again and I have, albeit not the same as before GBS. I know some have made complete recoveries so just keep on working at it, but take it slow and low. Don't push yourself because that is not good either. After all GBS stands for Getting Better Slowly.
Hugs & Bllessings
Kay
Ryan, hang in there and work hard, because it is hard work. I was laid up with gbs in the fall of 2013. It started earlier, but I didn’t know it til I started falling down as my legs would just buckle. Soon I was paralyzed from the waist down. Had plasmapheresis hospital/acute rehab for 4 months then came home and made good progress until a relapse. Today, I walk like a toddler, use a cane when out of the house and still have numbness in my lower legs. But here is the bright side, I’m 73, and don’t expect to get much better, but you are a teenager and I expect you to recover fully. Do your therapy diligently, don’t overdo, but don’t get lazy. Above all avoid getting any kind of virus. Protect your health, eat three good meals a day and ask your doctor what supplements might help you. And pray and thank God you are doing as well as you are and ask for the strength to see this through. God Bless.
Hi Ryan, I’m Lin and I just wanted to say that really all you can do is keep up the physical therapy and try not to over do it - it’s so easy to really want to push yourself and end up having a setback because you’ve pushed too far. It’s incredibly frustrating but the truth is recovery happens at a slow pace and there’s no way to increase the speed that the myelin sheath grows back. What I will say though is that for me despite being on a ventilator for 4 months and then in residential rehab for another 5 months within 2 years from the onset I was walking( with a slight limp), driving and working again. Some say that all the recovery that will happens does so within the first two years but I would dispute that. Little improvements have continued even after the two year mark. Don’t get disheartened - you’ve come a heck of a long way already. I wish you lots of luck and hope you enjoy an amazing senior year. X
Hi Ryan, and welcome! Your story sounds alot like mine, only 50 years sooner in life! Recovery periods vary greatly, but you have youth and a great attitude in your side. I was able to walk unassisted after 4 months, and return to driving after 6 months. All that was a year ago, and improvement continues. One lesson I had to learn was to be careful not to overdo my PT. One word of caution - your body may not react to exertion like it once did. At least for awhile. Listen to it, and communicate with the therapists.
Best wishes, and God bless you.
Wow! While it’s been a minute since I have logged in, I truly am thankful that I hit reply today. Such inspiring words and an awesome share! Like a lot of other people, my story is quite similar and this community makes me feel normal! I’m a former student-athlete and fully understand the drive to push, push and push. Like others suggested, be smart with your PT and OT and LISTEN TO YOUR BODY. If you feel tired, slow yourself and/or rest. By all means speak with your docs, therapists, family, any others you know who care and will listen. Unfortunately, you can’t put a time frame on a person’s healing. I’ve dealt with my issues since 2006. While I’ve made supa strides, it’s yet a struggle. Hang on and in and be the best YOU you can!! It’s a process. Thank God you’re here and thank Him for each and everything you go through. You GOT this!!! We are here for you!
Oh and my dx is CIDP. Similar to GBS but different.
Hi Ryan, I was diagnosis Oct. 20, 2014. I am still not able to walk yet. I just had my 2nd Ivig treatment 3 weeks ago . It made me feel worst. They are still not sure if I have Guillian Barre. I am going to a 3rd neurologist. I have had 60+ blood test, 6 MRI’s, 4 scat scans, a biopsy, and a x ray. I am getting better. I had the bowel and bladder incontinence. My balance is a lot better, I have gotten stronger. when I took the 2nd treatment I am in so much pain sometimes. Do you have any pain. they told me that is the nerves regenerating.Were you told the same thing. Did you loose all mobility? It only effected my lower extremity. My upper is perfect. I had no warning signs at all. I just got up that morning and my legs collaspe. I was very healthy ang walking 15 to 18 miles a week. I did not have any health problems. Did they tell you how you may have gotten it?
I was actually diagnosis October 23, 2014. I was admitted in the hospital on October 20,2014.
I only had muscle belly tenderness which was awful until it was stretched out over time, ever since then my nerves have had no pain. I lost all mobility at first but know I have gained about 85% back. They told me it came from an illness I had right before hospitalization.
Shirley Harvey said:
Hi Ryan, I was diagnosis Oct. 20, 2014. I am still not able to walk yet. I just had my 2nd Ivig treatment 3 weeks ago . It made me feel worst. They are still not sure if I have Guillian Barre. I am going to a 3rd neurologist. I have had 60+ blood test, 6 MRI's, 4 scat scans, a biopsy, and a x ray. I am getting better. I had the bowel and bladder incontinence. My balance is a lot better, I have gotten stronger. when I took the 2nd treatment I am in so much pain sometimes. Do you have any pain. they told me that is the nerves regenerating.Were you told the same thing. Did you loose all mobility? It only effected my lower extremity. My upper is perfect. I had no warning signs at all. I just got up that morning and my legs collaspe. I was very healthy ang walking 15 to 18 miles a week. I did not have any health problems. Did they tell you how you may have gotten it?
I so wish my family could have had this sort of support when I was ill! I was a Brit living in the Netherlands and there was no outside support for my family. Also none had ever heard of GBS. Trying to communicate on a ventilator in a foreign language while dosed up on morphine…! Sounds like a great idea for a comedy show. To everyone o e this forum - respect! For you and your families! It’s such a cruel illness - my ICU nurses voted it the worse thing that anyone could ever suffer from! So guys wherever you are in your recovery - celebrate, because you’ve faced things other people would only think of as a horror story! Love and hugs to you all! Xxx
Hi Ryan :: the first advice don’t give up : this will take time but it will get completely cured :: physio therapy is very very important and you gave to keep a positive and happy mode in you ::
I was diagnosed on 16 th oct 2013
: it’s been 22 months : I came home in a walker : could not do anything in my own : bit I was a fighter : I fought it out : today I move on my own : I drive : I socialize : I travel alone : but yes fatigue is there :: my feet burn 24/7 : I still get electric shock kind of feelings in my hands & legs : I can’t stand for a long time : I get tired fast :
But still I’m very thankful to god for giving me thus 2 nd innings : now I do things which I enjoi : I keep myself happy : and I’m positive We All Will Make It :: keep faith and don’t let GBS get over you : stay blessed : and wish everyone one of us a speedy recovery ::
I was 66 when I got it, too heavy but very strong. Within 5 days on vent 2 weeks to cardiac events, and another 3 weeks a gastrointestinal bleed that involved another operation. 7 1/2 months of hospital and rehabilition. Came home in a wheelchair May 7, then to a 2 wheel walker, a 4 wheel walker and outside in the yard and made small treks culimanting with 3 or 4 mile or mile plus walks. The outpaitien rehab started coming twice a week for the first month then every 3 weeks with a certified phisio therapist. Yesterday she said she was going to sign off on me; I still have exercises to do but am getting stronger every day. I don't push for too much exertion during the day anymore as the nerve pain at night ruins the rush I felt. I have a new time frame now; my new birthday was last October " can you move your fingers? Can you wiggle your toes" to now where I walk most of the time with no aide (inside only) and yesterday drove for the first time. Only hard part is getting into the truck, so carry a little stool to get up onto the running boards then pull the stool into the vehicle with a rope after I am in.Necessity is the mother of invention.
I am on 3 x 300 mg of gabopetin for nerve releif and occasionally I take extra a night if the pain gets wild. I will also usually take a sleeping pill so that I can sleep through the night as sometimes the feet, knees and fingers will wake you up. Feeling better every day and expect that sometime I will be able to some of the activities I used to do like golf (now will be with a cart) as walking 4.5 miles on a course would be too much. Balance is not good yet but will try to figure that out. Good luck.
Hi.I am also having axonal type GBS since 29th december 2010.I have been doing pt and ot. Now I use anckle foot orthosis (AFO) for my walking.I am still recovering.So do not give up.No mattervwhat it is you have to fight!!!
Hi Ryan, my name is Jane Friday and I was diagnosed a week after my 15th birthday in February of this year. The first thing my neurologist said to me after I was diagnosed was “You will be normal”. I fully believe this is true. I was let put of inpatient rehab on May 22nd and haven’t used a walker or wheelchair since. I still go to outpatient therapy but have already had my days lessened. Don’t push yourself too hard, stop when you get tired. Let your recovery take it’s course. GBS isn’t the same for any two people, but I’ve been told that recovery times are quicker when you’re young. Although your journey isn’t over I’m sure you’re starting to see the light at the end of the tunnel.
Hi jane : you have put your story in such a easy & wonderful way : keeping optimistic is the best way to overcome GBS :: and it’s so true every GBS patient had a different story and different tine for recovery :: let’s all put up our strongest smile and be happy cheerful and enjoy the life god has given us : get well soon dear :: god bless