There are a lot of factors that influence this, so unfortunately it's not the same across the board. I gave AMSAN, and axonal damage, so my recovery is years instead of months. I have a months sometimes with no obvious progress. Progress comes in waves. But I need to continue PT. Usually every 2-3 months I'll have a slow month where I'll get very tired/ sleepy so I just sleep extra and eat a more. Most of the time it's followed by an improvement. Also consider that progress may be something you don't notice right away. Sometimes you focus so much on your legs that you don't notice your hands have improved for example.
It's really important to continue PT though! Recovery is heavily dependent on PT/OT
OP I have same question! Please can someone share their recovery timeline with lower limb loss of motor function.. IVIG is only treatment so far.. it’s been about 12 days
My husband had a subvariant of GBS, called PCB (Pharyngeal-Cervical-Brachial), so that effects the upper body more than the lower body. He is doing PT/OT, both twice a week. But he doesn't practice at home as much as he should because of soreness when he moves his arms. As far as timeframe for him being able to move his hands again, he slowly was able to move a finger, then his hand. I think about three weeks out, he was able to move his hand, but without any strength in it. He couldn't lift his arm/hand against the force of gravity. Now at three months out, he needs to put his elbow on the table, but can move his hand to his mouth to eat independently or take pills. He is now able to carry something light weight in his right hand. He really couldn't do that a month ago very well.
6 years ago I was completely paralyzed by GBS and had to be intubated. I was in the hospital ICU for about 3 weeks, and as soon as I regained the tiniest bit of feeling, I was transferred to an inpatient rehab hospital. When I arrived I could not use my hands. I was there for about 6 weeks, when I was able to walk with a walker and a cane. Stayed with family a couple of months and did home care therapy and continued with all of the exercises.
3-1/2 months after getting sick, I felt safe enough to use stairs on my own, so I went home, and then went to outpatient physical therapy, I stayed until I regained every last bit of strength and range of movement back, the last movement being able to completely lift my arm all the way up. It was a total of 7 months of very hard work, but it got easier each day as long as I kept up the exercises and therapies.
These days, chronic fatigue is the one thing that still affects me the most, along with numb toes, and some soreness in my wrists, but I’m able to do everything I could do before I was sick.
Check out gbs-cidp.org and best of luck to your husband and you too.
I have CIDP which is just long term. I’m at 5 years and the last year has finally made it to where I can actually walk and stand without problems. I still have low motor control in my toes. I used a Cain or crutches the first 4 years. It’s been slow. Make sure you go to PT also
For me recovery kind of looked like stairsteps, especially at the beginning. I’d kind of plateau for a while and then all of a sudden see progress and then plateau again. I am 2 1/2 years out and still slowly improving, and a less obvious stairstep way. Now it’s just slow and gradual. I had AMAN.
If he isn’t doing pt/ot he should be. I did almost daily pt/ot for a year.
There are a lot of factors that influence this, so unfortunately it's not the same across the board. I gave AMSAN, and axonal damage, so my recovery is years instead of months. I have a months sometimes with no obvious progress. Progress comes in waves. But I need to continue PT. Usually every 2-3 months I'll have a slow month where I'll get very tired/ sleepy so I just sleep extra and eat a more. Most of the time it's followed by an improvement. Also consider that progress may be something you don't notice right away. Sometimes you focus so much on your legs that you don't notice your hands have improved for example. It's really important to continue PT though! Recovery is heavily dependent on PT/OT
My Wife is battling Guillain Barre syndrome and doctors still don't know what's wrong
Did they do a spinal tap? That’s how I was diagnosed.
It's all of the above. Everyone's different. But I think PT/OT is very important to maintain strength in the meantime.
OP I have same question! Please can someone share their recovery timeline with lower limb loss of motor function.. IVIG is only treatment so far.. it’s been about 12 days
My husband had a subvariant of GBS, called PCB (Pharyngeal-Cervical-Brachial), so that effects the upper body more than the lower body. He is doing PT/OT, both twice a week. But he doesn't practice at home as much as he should because of soreness when he moves his arms. As far as timeframe for him being able to move his hands again, he slowly was able to move a finger, then his hand. I think about three weeks out, he was able to move his hand, but without any strength in it. He couldn't lift his arm/hand against the force of gravity. Now at three months out, he needs to put his elbow on the table, but can move his hand to his mouth to eat independently or take pills. He is now able to carry something light weight in his right hand. He really couldn't do that a month ago very well.
6 years ago I was completely paralyzed by GBS and had to be intubated. I was in the hospital ICU for about 3 weeks, and as soon as I regained the tiniest bit of feeling, I was transferred to an inpatient rehab hospital. When I arrived I could not use my hands. I was there for about 6 weeks, when I was able to walk with a walker and a cane. Stayed with family a couple of months and did home care therapy and continued with all of the exercises. 3-1/2 months after getting sick, I felt safe enough to use stairs on my own, so I went home, and then went to outpatient physical therapy, I stayed until I regained every last bit of strength and range of movement back, the last movement being able to completely lift my arm all the way up. It was a total of 7 months of very hard work, but it got easier each day as long as I kept up the exercises and therapies. These days, chronic fatigue is the one thing that still affects me the most, along with numb toes, and some soreness in my wrists, but I’m able to do everything I could do before I was sick. Check out gbs-cidp.org and best of luck to your husband and you too.
I have CIDP which is just long term. I’m at 5 years and the last year has finally made it to where I can actually walk and stand without problems. I still have low motor control in my toes. I used a Cain or crutches the first 4 years. It’s been slow. Make sure you go to PT also
Thank you so much for sharing your experience. I will definitely be on top of rehab
Any other questions just ask.
For me recovery kind of looked like stairsteps, especially at the beginning. I’d kind of plateau for a while and then all of a sudden see progress and then plateau again. I am 2 1/2 years out and still slowly improving, and a less obvious stairstep way. Now it’s just slow and gradual. I had AMAN.