No improvement GBS after a year? HELP!!!!!!

    • August 12, 2015 at 7:02 pm

      Hi all, I was diagnosed with GBS on March 2014. I lost all funtion of my legs and hands.I am fortunate not to have any numbness or pain but its just frustrating with no other noticeable major improvements. I have not been able to establish PT or OT because of insurance mishaps. My neurologist is trying to push IVIG but I’m learning that might be another insurance nightmare.We are drowning in financial dept because my wife is my full-time care giver. The most frustrating problem was having insurance coverage but bills never paid due to every human or computer mishap causing bills to get unpaid and sent to collectors while you are trying to unscramble all the chaos.We keep hearing about a mystical fairy called a social worker care coordinator that we have been trying to seek who is supposedly assigned by a hospital or insurance carrier? I could go on for hours but I know some have it worst. Thank You for allowing me to vent this here. God Bless and I hope your recovery is going better! Nolan Arasato

    • jk
      August 13, 2015 at 1:16 pm

      Personally, I always felt there was too much emphasis put on outside services such as p/t and o/t. Sooner or later, you’ll have to take what they teach you and do it at home.

      Therefore, do it (p/t and o/t) on your own at home. Find some on line videos, go the library get a book, you get the idea. Live in the US? Find some county services.

      find a way to follow the Doctors’ recommendations. It is of utmost importance to get proper treatment.

      Still in the US? apply for Social Security Disability. Absolutely destitute? Apply for state aid. Medicaid or whatever they call it in your area.

      Stay happy.

      After one year- it’s probably not GBS anymore, by definition. Something from Hopkins medicine: “Diagnosis of GBS and CIDP is based on history, clinical examination and supporting laboratory investigations. These include electromyography with nerve conduction studies, blood tests and analysis of spinal fluid. In most instances CIDP requires nerve biopsy for histopathological evaluation.”

      go to:

      • August 30, 2015 at 6:27 am

        Thank you very much, Noly

    • August 28, 2015 at 10:05 am

      Engaging in P/T and O/T is really, really important.

      As JK said, do it on your own. I had initial physio and have been doing it on my own ever since. It has worked really well but plateaus can last for months. Also, improvement can be sooo slowly incremental that you don’t notice that you’ve progressed. Someone who doesn’t see you regularly may remark about how much better you seem and you hadn’t even noticed.

      Sounds like you’re still pretty restricted but try to do as many normal things as normally as you can. That has helped me beyond measure. It’s also good for your morale, once you find things easier to do.

      Re $$$…again, same as JK said. I’m in Canada, we have disability and I have a friend in Michigan who also got it stateside. Have you applied yet? You certainly sound eligible.

      • August 30, 2015 at 6:28 am

        Thank You for your encouragement, Noly