Reply To: Residuals? 21 years later?

January 2, 2018 at 5:30 am

Hi Liam,
I was 12 years old when I came down with GBS. I had no ivg transfusions or any treatment other than physical therapy and occupational therapy for 8 years. I was left with weakness in lower extremities especially the ankles. Could not do tiptoes, run etc. I walked unassisted and was very active, bike riding and swimming. I overcame alot of issues associated with the muscles that never returned.
Fast forward 42 years later- knees in last few years retaining fluid. Right knee is worse. Have arthritis in both knees. Painful when walking longer distance and instability in ankles. Snow, sand, rocks, I cannot walk without assistance. My feet are like jelly and no stability. This has came on suddenly as in August of 2016, I was walking my dog 1 Mile a day.
One symptom you described I also have had-
The water trickle sensation down my calf! I literally had to feel it, it was so real but nothing there, odd! I have talked to Doctors (a lot of them) and they look dumbfounded and said it is Not the fluid buildup in knees as it is isolated in knee area. I have been to a dozen doctors, orthopedic surgeons, neurologist, ankle specialist, podiatrist to no avail. I have a bag of expensive AFO’s, knee braces , special shoes, casting of correction and really no answers of the why, except that my knee joints are wore out and this is my life. I worked for 36 years, raised 2 daughters and was self sufficient, now I need help to do a step…..
No surgeons are willing to do any knee replacements or part/piece, they said it’s too risky and it may not help because I’ll still have same muscle strength and function as current. I really having a rough time wrapping my head around this as how can my muscles that I used go from 10 to zero. I know I compensated muscles for ones that never returned? I know that my gait has been very determental in general. I never saw neurologist, 1st time was 2014. I then could get up off floor without using my hands, now I have trouble even using my hands!
I do have restless legs and without medication, it is unbearable. I know I should make peace with what I have, it’s just unbelievable how fast it changed.
I am interested in whatever you find on the trickle down the leg cause. What is a rolltor? I use cane daily. I have no other symptoms you spoke of other than the strange sensation water. I will see doctor to discuss my EMG in 2 weeks. I’ll let you know if I find out anything new and useful and post to the site. Sorry for the book, and take care!