CJ MM,
Where should I start? I'm a "survivor" of this mysterious disease. Back in December of 2003 (I was 36 years old), I had just returned from a trip to Florida when I came down with GBS. It had started with a serious sore throat, while on vacation, and within four days I was in ICU. Prior to being admitted to the hospital, I had started to experience blurred and double vision. I had chalked it up to jet lag and felt that it would go away. I went back to work on a Monday and at that time was working as a School Resource Officer in our High School. I couldn't shake that "icky" feeling I had and thought maybe I was suffering from exhaustion or low blood pressure. I went to see the school nurse and asked him to take my blood pressure. He said it was fine, but he wouldn't let me stay and work. I went home and laid around for a day and a half. By Tuesday night my hands and feet were becoming numb and tingly and I couldn't walk without holding on to something. At 9:00, on Tuesday night, I tried to take a shower and was unable to control my hands. I got out of the shower and went into my bedroom and began crying. I thought I had a stroke. My wife came in and she immediately made a decision to take me to an emergencey room. We spent five hours in the emergency room, while the resident on call tried to determine what I had.
Luckily, just before this doctor was going to send me home for the night, she had the foresight to call a neurologist. She explained to the specialist what I was suffering from and he diagnosed GBS over the phone and ordered her to get me into ICU ASAP. The following morning, the neurologist showed up and did a spinal, to confirm his suspicions. They started me a treatment called Intraveneous Immuno-Globulin or IV-IG. I spent three days in ICU, while they monitored my breathing and heart rate and then spent another five days in a private room, while I continued my treatments. The neurologists that took care of me, said that I was lucky to have been admitted when I was. Fortunately, I was walking within 6 days and my vision had started to come back to normal. If I would have waited any longer, the GBS could have paralyzed my lungs and then my heart. They told me that GBS affects the body in a "reverse paralysis", working from the feet up. They also told me that GBS is initially caused by, what they called, "virus confusion." They said that it is a random disease that anyone can get. Apparently, as your body's immune system is fighting the virus, it becomes confused and begins to attack the "good" antibodies. Those anti-bodies are also responsible for keeping the nerve endings protected. As the immune system attacks the good anti-bodies, the anti-bodies leave your nervous system vulnerable and compromised. Therefore, the GBS then goes into paralysis mode. The key to fighting this is a quick diagnosis and the IV-IG treatment. I also believe that a positive mindset is crucial to a speedy and healthy recovery. I told myself that I was not going to spend the Christams holiday in the hospital, while my wife and two daughters were in a state of constant worry. I also had 8-9 pages of prayers and pixie dust from my friends on The Dis, once they found out. There was a couple of weeks of therapy for my vision, but the use of my hands and legs returned on its own.
Just a couple of footnotes to this. About a week after I was released from the hospital, I came down with a case of Bells Palsy which was an after effect of the GBS. It cleared up on it's own in about three weeks. I did make a full recovery from this and returned to work about three months from the date that I was diagnosed. It did affect my vision and I now have to wear glasses, but that was the only after effect. When I tell people that I had suffered from GBS, and especially those in the medical field, I'm told that I am one of the fortunate people to walk away from this disease. At the time, I did not realize how devastating this disease was, but my wife had done some research on the internet and told me several days later that it could have been fatal.
Jumping on this disease in it's early stage and getting the proper treatment is so very important to recovery. It can be done, but there also needs to be a positive attitude to go along with the treament. I would be more that happy to speak with you and try to answer any questions that you may have. Let me know and I can PM my phone number to you or you can e-mail me at
ttoth@ci.tonawanda.ny.us or
shenzie8@msn.com. Please let me know if there is anything I can do!!!
If you look at the titles under my name, I changed those shortly after I returned home from the hospital and have kept those as a reminder of how lucky I really was!
Lots of prayers and loads of pixie dust for your son and your family
Tim
and prayers are with your family.
