Hi all,
It’s been a while since I posted anything. I was diagnosed with axonal GBS in July of 2015. My recovery has been slow but steady. I found getting involved with as many activities as possible helped a lot. PT and OT at times seemed worthless and frustrating but, I was constantly reminded that GBS is getting better slowly. Now at 2 years and a couple of months since my diagnoses I’m jogging around the local high school track. My OT therapist and neurologist both say the hands are the last thing you get back and is apparently true for me. I continue to strengthen my hands combined with weekly massages following hot wax treatment. I have noticed some occasional muscle spasms but, only in the morning when stretching and only lasting seconds. I know every case is different but, if my experience is of any encouragement I will continue to update.

Keep moving
Ron

Hi Angie
I appreciate your response and I have decided not to have another EMG. My OT therapist recommended the same.
Ron

Hi all,
My journey has been filled with ups and downs like many of you. I visited my acute rehab site last week and found it to be wonderfully encouraging . I met with my PT and OT therapist who could see my improvements. As I was leaving the neurologist who gave me a EMG and confirmed axonal damage. I told him I was going to my neurologist in April and was considering having another EMG . He said it would only show what I already know and recommended that I just let it continue the clinical course. I would appreciate any thoughts on repeating the EMG at stage of my recovery.
Thanks,
Ron

Hi I’m in the medical field and was
Dx with axonal GBS July 2015. I spent
two weeks in the hospital and had seven
rounds of PE. I was moved to acute rehabilitation for one month and followed by six weeks of subacute rehabilitation. I came home in late
October using a walker,AFO’s and wrist braces. I still needed help with my basic needs but being home gave me motivation. After a few weeks my visiting PT suggested outpatient therapy but I didn’t want to go with the walker.
My motivation stepped up and I started walking without my walker. I would go outside to my backyard and walk around and go to the mall and restaurants with my wife and daughter. With this being the winter I could hide the wrist braces but when the spring came I began to feel discouraged about my hands. I tried very hard working with OT to strengthen my upper body and arms. My OT said that this would make its way into my hands and by late summer 2016 I was riding my bike after noticing movement in my wrist. I stopped using the wrist braces and began concentrating on my foot drop so I stopped the AFO’s and my PT started me on the treadmill. I worked on improving my gait and heal to toe walking. This brought me through fall and winter of 2016. I’m still waiting for my recovery to come back to my hands and I feel like it is going to. I can move my fingers and straighten my thumb and index fingers. I gotten back a lot of my independence, I drive and shop on by myself. I still have numbness in my big toes and my walking is improving. I have not returned to work completely, only twice a week. I go to therapy three times a week and look forward to working out with patients who have different experiences. I hope to hear from those in the forum who have been dealing with axonal GBS for years and to get updates on where they are now.
Ron

Please updates on hands questions.
Ron

Hi I was diagnosed in July 2015 and had PE (2weeks) in hospital followed by 1 month of acute rehab then 6weeks subacute rehab. I came home with a walker and after 2 weeks began using only AFO’s. Began riding my bike and walking unassisted late summer 2016. However my hands are not progressing as well. My dx is AMAN GBS which means I have axonal damage. I been told that my recovery is going well but, I have periods of anxiety. I’m curious to know how much you have recovered. I’m blessed to still be here.
Ron

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