Reply To: GBS without treatment ?

March 17, 2024 at 11:03 pm

Hi my name is JudeP

I contracted GBS in 2000.  I came out of back surgery and, in the recovery room, the pain was so bad they didn’t know what to do.  My neurosurgeon called in another neurosurgeon to consult on what was wrong.  They went back into my back to see if there was any problem and found nothing wrong.  They woke me up and said that I had a rare disease that was GBS.

I was under so much pain medication that I don’t remember any of the first couple of weeks of recovery.  I was paralyzed up to my mid chest in full pain.  After months of rehab in hospital, I was still somewhat paralyzed when I went home.

I could walk with help but still could not walk alone and was in a wheel chair.  It took about three months of constant work to be able to walk with canes.  Never did I regain my original ability.  They told me that I would regain everything, but I was 55 years old and I think they were thinking of those young people.

I now have more residuals showing up that were gone at first.  As I get older the residuals come back and worsen. My legs hurt to the touch and are partially numb.  My feet are more involved in numbness and pain at times.  The sweating and exhaustion are getting worse along with frustration.  My balance was always involved but now it is getting worse.  I am 78 years old and I hope this will stop increasing.

I now need a knee replacement and I am scared that I will have so much more pain than I had with my first knee replacement before I contracted GBS.