I was diagnosed with GBS on Nov 2011 at 30 years old I am 33 and still need assistance to walk my left side of my body still has a lot of weakness. I have a lot of nerve pain on both sides and have bursitis on both hips at times I lose hope, feeling this is as far as I’m going to get but then I dig deep and remember I’ve already came further than the neurologist had told me I would get ( he said I was in the 10% that would not recover, I was using a walker then, now I use smart crutches ). I hope I can regain who I was
For me, i refused to listen to anything negetive like that from my Dr.'s. I had a couple of FANTASTIC neurologists. I kept a positive mind set and set goals... Like in 3 weeks drom now I will feed myself, and on this date I will take my 1st step w/out help.. Just things like that: and I acheived everything I set out to do. I'm fully functionable 30 years later. But I still have numbness and tingling and severe back pain. It's just something I have always learned to live w/. I also had intense physical therapy. I would just say to you, try and stay as active as you can. I know the simple little things every day will wear you out, but keep moving as much as you can. It'll come back. You're young enough that w/ hard work and a positive attitude you'll do it!!!!
Although no one can say how much function you will recover, you already answered your own question, for the most part. At 33 you still have many years to work to improve your situation. I believe you can recover most, if not all, of your previous abilities. The doctor said I wouldn't walk again (two years ago), but he was wrong. I still don't have as much strength as before (maybe I never will), but I work at it every day, and see improvement over the very long haul. I'm 62 and don't have as many years to recover as you, but I'll still give it my best shot. Working at it a little bit every day works best for me. I recommend it (just don't overdo it).
Good luck!
Hi I cannot agree more with Lance. Most doctors have not dealt with this and are just guessing. The one thing that most of the doctors that we dealt with had in common was lots of experience with GBS. One had work on over 10 cases and the others had at least one or more. The one thing in common was they all told us was it would take a long time. They said it could be one year up to ?. So be aware of the small victories and celebrate the big ones. Stay positive and do not give up. The one thing in common with all of these cases is physical therapy, DO IT and do it every day, listen to your body stop before you get too tired that was the one thing I had to watch out for in my wife. She liked to push past the point of stopping and I had to step in. Also if you have help let them do the things for you that they can. This not to say you can not do them but it is to conserve your energy. With this illness it was explained to me that you are like a battery only so much juice so save that energy for the things that are really important to you and let others help with what is not.
Good Luck!!
Thank you, everyone who replied to Melissa’s concerns! Reading your advice helps others like me (Ive only had GBS two months).
Thank you all it helps ease my mind, I also set goal but then was told not to because the were unrealistic. Though at times I wonder if I was wrongly diagnosed because as soon as I was admitted I had a spinal tap done
And it didn’t show anything but the neurologist said it was still GBS and it was to early to detect then after being in the hospital for over a month I had a nerve test and showed I had some abnormalities, a year after the first occurrence I had a relapse ended in the hospital for over a month just because I got a cold had to learn the little I could do all over again. At this point I do aqua therapy because after having been in physical therapy so long the pain was getting too much. The neurologist told my husband and I it was no longer a case for them I just have to keep going to therapy. This kind of threw me off because they told me I had nerve damage but they no longer need to see me. I’m so confused, I don’t have a Dr who follow ups on me just a physical therapist and now finally a pain Dr. I’m I missing something gets frustrating
Hi Melissa,
My wife was diagnosed with GBS on Oct 2011 at the age of 26. Today she can walk without any support but not much balanced. Also, she has to avoid crowd. In my view, you should work on balance exercises.
Chandan
I am wondering why there is no follow up on most of of the cases in the discussions group. This seems to lead to lots of questions and guesses on the patients part. We had follow up visits at 3 and 6 month periods, less as she got better. This allowed us to ask about things and check on the meds she was on. One other thing that help my wife was the water therapy. We had one session in the water and one on land. They gave us things to work on in the water and we would go to the YMCA and do them there with me in the water with her. She would do her exercises for the land with me watching her to make sure that they were done right. That is why I stressed that it is so important to go with the person to therapy. You as the helper can see what is going on with person getting the therapy. I could monitor my wife and stop her from doing it wrong or when she was tired and did not realize it. Plus it made it fun to see the progress and it is better when there is 2 of you doing it. The support for each other is so important!!! I truly believe this aided in her recovery, We were a team! Was it easy no but the time and effort paid off. She also had lots of pain and what I would do was talk about the good times we had and the things we could look forward to doing. I would describe sitting on our dock with the sun shining on her and how warm it felt and the waves hitting it, walking on the beach and how the sand felt on her feet. Things like that took her mind off the pain and put her else where. There are other things we did but I am reliving it again so I have to stop Hope some of this helps
Mike
@Chandan yes we work on balance too, I’m glad to hear your wife has improved. I still can’t walk unassisted even with my crutches I’ve fallen because my leg loses all feeling and goes numb and feels like when you hit your elbow that pain you get yes that’s what my leg feels like then it just gives up, I too have to avoid crowds and always have someone by my side. @Mike yes it’s true what you said I’m also blessed to have such a supportive husband without him I wouldn’t be able to get by he’s been my rock and has stepped in to be Mr.Mom he guides me with my rehab. Thank you it was helpful.
Yes thank God above for all our caregivers, husbands, wives, family members for all of their support!
My Neurologist told me that due to the severity of my GBS (damaged myelin sheath as well as severe axonal damage), it would be a long recovery for me and that there was a chance that I may never recover from it and may never walk unassisted. Well I refused to accept that and I prayed to God for help. 8 months after his prognosis I'm back at work. Some minor numbness and tingling on the feet but hey.....I'll take it.
After reading some of the messages here on this site and other site and I see their struggles, I definitely believe that God is responsible for my healing.
I'm glad to hear that your are recovering better than expected. My neurologist also thought I had axonal damage, and would not walk again. But apparently they are frequently wrong, because here we are, walking again! Like you, I also have numb and tingling feet (and hands), but like you say, I'll take it. It's way better than the alternative!
Cheers!
That's right, "recovery" is a relative term. The fact that we're still alive means we've recovered! How much of our original functionality we get back varies quite a bit. I think it's really a bad policy for the doctors and medical professionals to say most people make a "complete recovery." I don't know anyone who has the same movement and nerve function as they did before, so I don't know where they get their statistics from. But I do know that my muscles get stronger the more I exercise them, even though it's at a really slow rate. The nerves that are still screwed up at this point will probably always be this way (2 1/2 years later), but that's life.
I agree: "Stay Strong and keep a Positive Attitude!" Good luck!
I just had my 7 yr anniversary this week of GBS. I was told a lot of negative things I wasn’t diagnosed or given any treatment for the first 4 weeks. I was told it would be at least a year before I could go back to work after going to a rehab facility for 6 months to learn to walk again.
None of which was right. I was 39 at the time and had a full time job as a hairstylist and a part time job as a switchboard operator. I am still full time stylist I left the part time job 6 months ago. I returned to work at the switchboard after 4 weeks and to the salon after 6 weeks doing both in a wheel chair. I refused going to a facility because I am single and would loose my home and everything the point is it was a huge struggle everyday but I did it I was walking with only a cane after 8-9 months I still have a lot of issues with partial paralysis pain CIPD etc but I get up everyday and go to work.
I’m not saying that’s the path for you what I am saying is fight don’t loose hope don’t believe that you can’t won’t or shouldn’t keep the faith that you will all in time
Hi mdolich,
Yes, she is using AFO now. Initially, she was walking without them. We have consulted various physio about using AFO during her initial walking but there was a mix feeling. Some of them were against it, they were saying recovery can be stop after using AFO. But now she is using AFO mainly due to 2 reasons 1. foot drop problem she is facing & 2. she was feeling tired after walk without AFO. Thanks for sending pic. The AFO she is using is almost same as yours but she is not wearing shoes, sent a image. We are concentrating on balance exercises but nowadays she is losing hope as it is almost 3 years.
Chandan