As a long term surviver of GBS, I’m here to say that there is hope for a near normal life.
I was diagnosed with GBS in April of 1995. Like so many of you have described, it started with a high fever, burning sore throat, and massive body aches. It was a Saturday morning and I woke up with pins and needles feelings in my feet and my legs felt heavy. I went to the local emergency room in Paola Kansas and was lucky enough to get an emergency room doctor who had seen GBS before. He ordered a blood test and called someone in from the lab to process it immediately, I was sent home to wait for the test results.
About 2 hours later, my phone rang, I could no longer walk. I crawled to the phone, the doctor said that a protein was present that was consistent with GBS and said that I needed a spinal tap to confirm it. Learning that my paralysis was advancing an ambulance was dispatched and I was rushed to Olathe medical center where they did a spinal tap and confirmed that I had GBS. I’ll never forget the neurologist saying "I’m not going to blow sunshine up your ass…you are in for a long hard road " I was in the hospital for nearly 90 days, about 60 of that in the ICU. Day after day of plasma foresis, getting woke up every 1/2 hour to track the progression of the paralysis.
I remember having to concentrate really hard to make any movement happen in my feet and legs, and the advancement of the paralysis was stopped just short of my diaphragm. I dodged the bullet on being trached!
Rehab was really tough. Thank God I had the use of my upper body, I could walk with a walker. We started with just concentrating on just getting movement. I would have to focus on a foot and try to get it to move. That progressed to walking while holding on to a bar fixed to the wall and just sliding my feet one at a time. It was mentally exhausting. The real problem with GBS is that it destroys the muscle memory that you spend your whole life developing and repetition is the key…after GBS you have to think about every move.
Within one year I was running again,playing tennis, snow skiing, but it was not the same, I have no feeling in my feet or legs, and what used to come naturally now takes concentration.
I have led a nearly normal existence for the last 20 years in spite of the constant stretched rubber glove feeling in my legs.
Now the GBS has entered the second phase and a form of arthritis called spinal stenosis is setting in. It is a calcium build up inside of the vertebrae below the level affected by the gullian-barre.
The good news is that there is a Lazer surgery available, they’re going to burn away the bone from the spinal cord to enlarge the space and relieve the constriction on the spinal cord.
I will keep everyone informed