My story started 4 weeks ago when my left leg started to go numb from the thigh down to my foot, then my right leg from the foot upward. I had IVIG every day for 5 days, which stopped the progress. After 5 days of no further affect I was moved to rehab, where I have been making good progress - my right leg is almost rcovered and can bear weight. My nerve recovery seems to be traveling backwards the way it came. Rehab here is really intense, which I credit with my progress. I hoe to be able to walk by Christmas. I don't have much pain, just muscle spasms. Hope you continue with your recovery... just remember to get enough rest and doin't overdo.
I’m in my 7th week of rehab. In icu for 5 while receiving ivig and then moved to basic medical watch and received plasma. Last day after plasma I regained about 90% of my arm range of motion. Then moved to rehab. I’m starting to stand on my own and I can walk w a walker about 150 steps a day in rehab. My recovery started from my head down. Even had facial weakness. I’ve regained a lot of quadricep strength back but very lil hamstrings and glutes. But I feel something there. Starting to get calf strength and movement in my ankles even with my foot drop. My left ankle though is still has very little movement but its better then when I had no movement.
Just read your message - how are you now?
Its a horrible disease, huh? I was lucky I only lost feeling in my legs, Its been 2 months and I am fully on a walker, and part time on a cane. It does ge better - it just seems to take forever!
UPDATE: So i’m now almost 7 months on from diagnosis and thankfully my progress has continued to be good. I have been home for 3 months and I can now walk a couple of kilometres unaided. I can carry my 12kg son up and down stairs and most of my flexibility has returned. I do still have significant weakness in my legs and particularly ankles, no chance for running even a couple of steps. I was at the neurologist last week and the nerves in my hands are slightly slow but well rcovered but my feet aren’t even measurable yet! Has anyone else had nerve conduction studies post-GBS and how long did it take to see an improvement? I have another appointment in two months and will keep you updated. Thanks for the ongoing support and advice.
I am so pleased that things are going well for you. My daughter was diagnosed the same time as you and now although she appears well during school hours - she still struggles when she gets tired and is faced with pains, particularly in her side and stomach. They last about 1/2 hour and seem to come in waves. Do you have this sensation? I really feel that there is nothing I can do - she doesn't even like to be cuddled.
Great news... I have been watching your post. I have had the conductivity tests. I do have my reflexes back and I am told the conductivity test looks excellent. In my past appointments, he only said that I was improving and he expected a full recovery. He would not tell me as compared to normal, he just said it will take time. I was in the ICU seven days so I was no where close to you in the duration of the paralysis.
Mum.... The exhaustion will last a long time. I still have residual numbness in my hand and tire easily. I have a prescription supplement and have been offered other meds. In many ways I wish I just broke my arm or something rather than have this affliction.
It does get better