New forum story

    • Anonymous
      August 31, 2007 at 11:45 am

      Hello everyone. I’d like your opinions on my husband’s situation. He was diagnosed with GBS in early April. It started with facial paralysis, then muscle weakness in all extremities. He received some IVIG treatment and felt better. In late June he tried going back to work as an electrical lineman for 2 days after which he could barely walk at all. Since then he’s had a lot of trouble standing up, climbing stairs, walking and balance. The first neurologist never did anything more than observations and test reflexes in the office but did give the IVIG treatment, every other day for 3 treatments in one week, then one treatment a week later. After the attempt to return to work, my husband had a couple more IVIG at my insistence but the doc generally ignored us. In July we finally changed doctors and went to the University Medical Center. The neurologist there did all kinds of tests – all of which came back normal. He says it could have been GBS but there’s no way to prove it and at this point there is nothing more to do…no treatment…no further testing. He says that in 6-8 months GBS patients are healed as much as they are going to heal and that my husband may never get any better. My husband seems to be taking the news fairly well, much to my surprise. I however, am not. Any suggestions? Has anyone tried the herbal concoctions I’ve seen on the internet with any success?
      wife of BK

    • Anonymous
      August 31, 2007 at 12:20 pm

      hi & welcome,

      your hubby did too much by going back to work & now needs to rest big time lying down doing nothing. he must do this as many hours a day as he can for as many weeks/months as it takes to recover. when up he should do things as slo as he can & as little as he can. he has had a setback & rest is the only help. the 6 month recovery time frame is a myth. no one knows how long nor to what degree a gbser will recover. take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      September 1, 2007 at 3:01 pm

      I have a “fight” with your husband’s neuro. He didn’t tell you true 😮 I am post GBS by 12+ years and continue to find little improvements. No, not the big ones like when I started walking again or not always having to use the electric cart; those were in the “early years”. Now, most days, it is easier to hold my arms up to do my hair, or I can stand at the sink for a while and do dishes or cook. Or, I garden a little longer. I could go on but the point is [U]never give up[/U] just because someone else makes an “educated [I]guess[/I]” (which sometimes isn’t worth much!!)

      I wish for your husband and you the best 🙂

    • Anonymous
      October 17, 2007 at 10:53 am

      I’m no doctor but did they do a spinal tap? Elevated protein in the spinal fluid is a very good indicator of GBS. That was how I was diagnosed. Never give up and it will take some time to get better.