Reply To: Effects of GBS over 2 years later

December 29, 2017 at 1:54 pm

To Reply to Birdalot,
Thanks so much for your input, it made me smile to know that you had GBS 2 years earlier and did so well after without having any of the latest treatments! I currently did not see neuroligist until I was in my early 50’s. Being 12 yrs old, I did not direct my care, my parents were my force and they did not know much, I went with the flow. I did not need a Trach as my breathing remained stable after 1 week. I am very happy for you to have full life with Children and completing your studies in college. Retired now?
I am pushing on but I guess I did not think this would happen…..I was active (as I could) for many years and to look at a step and wonder how I am going to tackle it, that is hard. But having waek ankle muscles & weak calf muscles, every step is like slam, I gather that is because my knee muscles are not doing what they used to. I to date have not found a Doctor that is well versed with GBS here in Michigan. Especially that could relate to our conditions in late state of treatments methods. I also know of no known book. I’m ready to write one, LOL! I do belong to Autoimmune publications so i can be aware of any studies or progress.
Do you have restless leg? Did you primarily walk on sides of your feet? Did you rely on stronger muscles to use while some muscles did not return fully? I am very happy to have you reply and very happy to know that you are doing well!
Also years ago I had awful callus on my feet from my walking style, but then I removed all callus’s and feet were looking pretty normal. Now since my knees have worn out, I am using again different muscles, callus are back along with spur bone on side of my right foot. Doctor’s say it is because that is where I am putting the pressure to be able to walk. I hope to get AFO/Braces to stop that.
Hope to hear from you soon and again THANK you for your reply!