Pain & Recovery? GBS Syndrome

[GBS_WIFE]

My husband began having severe lower back pain 01-15-08 that became excruciating in two days, began to lose coordination two days after that, then started falling, and then could not stand up, then could not move his legs and lost feeling in his hands, all within 10 days.  He was diagnosed with Guillain-Barre on 01-25-08, had 5 Plasmapharesis treatments, released Feb 13th, with in-home physical therapy and return visits to the Neurologist scheduled this month.  He can move both his legs, only the toes on right foot, cannot flex his feet from the ankles, cannot stand, has no strength at all, his muscles have all deteriorated, is still in excruciating pain in both legs and his hands.  He is on Neurontin, 1200mg 3xday, skelatin 3xday, naproxen 2xday, oxy-codone 5mg a day for "break-through" pain...he is 64, has exercised aerobically and weightlifting 3x a week for the last 20-years without fail...never been ill before, was in great shape with last gym visit Jan 11th...how long does it take to recover...when will the pain stop?  Anything else we can do or try??Please help!!

[doglady2007_pugs]

You have my sincere sympathies, I was diagnosed with GBS in April of 2008, but I don't have a severe case as you have described with with your husband. Mine started out the same as his, severe pain in lower back(Ihad fallen 2 or 3 days before, thought this caused back pain) severe pain down the inside of my arms and legs, numbness intense tingling in my hands and at first just my toes then all of my feet. then one side of my face started drooping, of course I thought I'd had a stroke, went to the emergency room and explained all of my symptoms, but the doctor just focused on my face, ignoring my arms and leg and feet symptoms. He said I had Bells Palsy. The next evening the same thing happened to the left side of my face, I went to the emergency room by myself as I had been told I'd not had a stroke the previous visit. The doctor called a neurologist and he said for my family doctor to refer me to a neurologist. I was put into the hospital and had a spinal tap and was told 2 or 3 different things it could be, determined it was GBS. I had the IVIG teatments, also 5 in all. As for your questions, what I've learned on my own is that each person recovers differently and there is no set time for recovery. It can be weeks, months, or even years.The treatments may need to be repeated, ask your neurologist. I am 61 years old and like your husband, I was always healthy and never seemed to be sick when every one else was, and a nurse told me when I had my treatments that she has had a lot of her GBS patients tell her the same thing!   Since your posting was in January, I'm sure your husband has made some recovery and you've learned more about GBS. Please reply as I would like to hear of his progress as I've never even talked to any one who has GBS.I'm sure this is very depressing for your husband as he was so active and physically fit. My heart goes out to both of you. My legs did give out on me, just as your husband's did, but it didn't last. I am able to walk, but not for any distance or stand for long periods of time as my legs are weak and my balance is not good. I have to know my limitations or if I over do, I'm wiped out for the next few days.The only pain I have now is the pain in my lower back, and that is just when I stand or walk. The minute I sit down or lay down, the pain is gone. I've not figured that one out yet, I'm going to ask my neurologist on my next visit. Did your husband require breathing assistance? You didn't mention it, but some people do have to be put on a ventilator until they recover, if they recover. I'm thankful that I do not have a more severe case than I do. I wish I could tell you both some thing that would help, but I can't. Its a real bummer to be our age and we should be enjoying our retirement years, even if we haven't retired yet and then this hits! With sincere regards.......