Gbs uncertainty

Im a teenager and currently in highschool. My gbs started on my face, i know this is unusual but theres no explanation for it. I jad my first does if ivig after 6 of signs and symtoms showing. This was 1 of 5 doses.

After this i went home and i was fine. Improvements were very slow. After about 2 weeks it was slowly afecting my legs and progressing up my legs to my thighs over 2 weeks. I was taken back to the hospital s soon as the leg thing happen. I got given another 5 days of ivig with no improvement. So before resulting to plasma exchange they gave me steroids which seemed to do the job.

I cant walk unaided and currently using a frame like thing to get around.i fet tired very tired and only managed to walk 70m with a frame with 3 sit down 1 minuet rests between. In bed i cant lift my legs against gravity, although when i lay on my side i can move my legs freely.

Ive just started my second week of rehab and just been given afos for my drop foot on both sides. During pysio all i do is walk back and forth as much as i can.

The thing which worries me is that my left leg always buckles and gives way. The whole left side is weaker in general a little. My face is slowly getting better and i can almost close ny eyelids entirely and eating and talking is alright despite not being able to smile at all.

Thankfully my arms are fine. I understand ive got along road ahead of me but i just want to walk again. Ive got no pain but only numbness in my feet. The thing what bothers me the most is the uncertainty that lays ahead. I keep asking my self the same questions, am i going to recover significantly? or am i going to ever smile again and walk unaided? My reflexs in the legs are there but very very minimally. I can tense my leg muscles normally. I cant move my ankle or toes. Its been 4 weeks but a very long and challenging period ahead of me.

Please feel free to add advice or some of your story and how you are progressing. Or any suggestions or tips.

Hi dear! Please remember that it gets better! You can move your arms, and even walk a little. My case was terrible! I was completely paralyzed from the neck down, in my face and I couldn’t smile either. Today I can walk, talk, smile, and even wear my heels again. I pray that you don’t become discouraged and remember that it is a process. There will be light at the end of the tunnel! You are already doing more than most people with GBS. I want you to be encouraged and focus on what you can do and not on what you can’t do YET! You are going to make it!!! No worries! Just take your time! Make sure you post a picture of that bright beautiful smile when you’re able! Because it is going to happen! Stay strong my love!!

How long did it take you to recover and how much of a recovery did you make? Like can you walk up stairs fine and run?

Hi Paulo! I had symptoms in my face first too then ascending numbness/weakness that started in my toe and moved up my calf and thigh then spine. It was harder to smile and I had trouble chewing and speaking at my worst. I had trouble turning my eye, had blurred vision for awhile, and facial numbness/twitching. It was a tough journey

I can do most things pretty good now. I can still tell that I had damage to my nerves but it doesn't affect me too much now. I can walk up stairs fine and am able to run. I'm about 17 months out now though. It happened to me in June 2014 and I was able to walk upstairs pretty good by October 2014 and was jogging again in November 2014. In December 2014, I mainly had leg twitching and some endurance issues. All along though it was up and down but just kept getting better. Physical therapy really helped. I can actually remember the day I could whistle again. Sounds funny but it meant a lot.

Hang in there and don't get too discouraged along the way. Recovery takes time and patience but persistence. Feel free to contact me anytime. I can definitely relate to the frustration of the facial issues along with the leg issues. Good luck to you!

I can walk up stairs well and even though I still get tired sometimes, I can still do what I need to. I just started walking again mid July and I can walk, run a little, wear heels when I need to and I’m getting stronger everyday day. You will too!

i had to learn to be patient, { hardest thing to do for me} your young and strong you can do this. it took a few months for me to fell better. i am almost three years into this crazy syndrome, it dose get better, hang in there. i have a wonderful support team that has been their by my side threw it all. one of my biggest weaknesses was letting other help me. i was very independent person. my advice dont over due it. it will happen, the feeling normal. and you found not only the best sit on the net but some really awsome strong people here,. just remember we have all been their and it sucks. hang in there before you know it you will be feeling better.

Im praying every day that i get better. I hope one day i will become a survivor and then i can help others. But for now im just taking day by day and looking back on my progress after each week.

Slow improvements are made each week, although my quads still remain the weakest making everyday objectives much harder.