Living with Guillain-Barre Syndrome

I’m more of a help seeker than someone who is supposed to help others here. My mother was just diagnosed with GBS at the end of June 2009. Her pain started in the shoulders and neck, then arms and legs were gradually loosing their strength. I had to carry her on my back to the car as she was crying, and then to the ER. In retrospect I regret not taking her to the ER as soon as walking became difficult and before she lost her ability to walk completely. It took her 5 days from the time symptoms first appeared until she couldn’t walk or stand at all. It took about 2 weeks from the first symptoms until she lost all muscle strength and couldn’t even move her fingers or toes.

It’s been month and a half since being admitted to the hospital and it’s looking horrendous at the moment. She spent 25 days in the ICU, 2 weeks into her hospital stay she was put on the respirator after swallowing became difficult and week later tracheotomy was done. 2 rounds of IVIG didn’t help at all which was unusual according to the neurologist. First round was 5 days, the second 3 days. In most cases IVIG slows down the process and helps to reverse it.

She’s been on the vent for about a month now and what gave me the chills is what one of the neurologists overseeing her said. And what he told me is that he can’t promise me that she will ever walk again, but then just very recently he also said that she will probably remain paralyzed from the neck down for the rest of her life. They told me the odds are stack up against her. I find that difficult to believe after reading all the stories and knowing track record of many doctors giving prognosis. What lifted me up again was another neurologist opinion from the same group. He told me that it’s not necessarily that she won’t walk again, and that it’s difficult to predict anything because he simply doesn’t know how much damage to the nerves and nerve coatings has occurred. He said that it may take 6 months, maybe a year before any improvement will begin. From my research, peripheral nerves do regenerate themselves, but it takes a long time. Peripheral nerves regenerate themselves at the rate of 1mm - 5mm a day. But who is to say that they will regenerate themselves at all.

Patients with even most severe cases get back on their feet with number of residual effects like fatigue and numbness in limbs. My mother is not even 55, fairly active individual and being bed-ridden would be devastating prognosis not only to her but to the whole family. We are not even telling her what one of the neurologists said, because it’s only his opinion that I believe would interfere with a recovery. I wonder, what being aware, coherent and awake like she is, while not being able to move anything, will do in the long run. It has to be a killer to otherwise healthy individual. The other problem is that she only has me and my father to rely on. Entire family lives overseas.

I don’t know how much and how reliable is the information nurses have, but one of them told me that it might be a whole year before my mother gets any kind of movement back. What she is going through I have no clue. Those of you here that went through this probably have pretty good idea. I’m curious to see if anybody here had a severe case of Guillain Barre where doctors didn’t give them much chance. We don’t know yet how severe it will be, but it’s not looking good so far. Month and a half has past since first symptoms appeared and no movement is coming back. It’s been about a month since she stopped moving her arms and legs, but it’s long enough I think to drive even the most resilient people insane. Please let me know if any of you had a severe case where prognosis was paralysis for the rest of your life. I can’t imagine that she will be bed-ridden until she dies. It all seems like a bad dream.