Guillaume Barre.In July of 2004 I was diagnosed with Guillaume Barre Syndrome or CIDP. I am 32 years old and my life was about to change. This is a short story about what happened and how my life has changed since then.
In July 2004 I was enjoying a vacation with my wife and kids when on the 3rd morning of the vacation I became virtually paralyzed from the waist down. I woke up at 5:30am and could not move my legs. Slowly during the course of that day the pain and numbness slowly wore off. The next day I felt little to no pain however it did resurface before the vacation ended.
When driving home from our vacation (600 miles) I noticed a lot of tingling sensations. It would feel much like your arm going to sleep or even the feeling of hitting your funny bone. What made it strange is that you would get these sensations everywhere and anywhere. Have you ever had the back of your head go to sleep? Must people would probably so no but I have. It has no certain place it likes to pick on. It actually goes here there and everywhere but usually constantly stays in your legs. After returning from vacation I went to see my normal Internal Medicine Doctor. After 2 visits he decided I needed a Neurologist. That’s when I started to get a little concerned.
Upon my first visit to the Neurologist he explained to me that there was a possibility that I had Guilluame Barre Syndrome. Of course I asked what that was and he said it is a very serious syndrome where the Immune system and the Nervous system fight each other. In fact the doctor looked at me and said here is the spectrum as he held his two hands out in front of him. Some people (as he raised his left hand) have it and don’t know there ever have it and then it goes away. Then some people (raises his right hand) die from it in 4 or 5 days. This was horrifying to hear. No antibiotics were being talked about. No take this and see me in a few days. No I think you just got a bug. None of that. Instead I was told that this was serious and that the doctor and I were about to start a long relationship with each other and in the end, although he could not tell me when the end would be, I may be fine. Quite honestly I was in the doctors office for a good 30 minutes after his explanation but I could not hear a word he was saying. I was hearing his words and seeing his lips move but instead of his face I was seeing my kids. My Son skateboarding. My Daughter at Dance School. My Wife enjoying a backyard picnic. It all flashed right in front of my eyes. I then heard him say “but you may just be fine but start taking this for pain and I will see you next week”. “Next Week” I said. “Yes”-said Doc. “Next Week.” That’s when there was no doubt in my mind that he was for real and that this was not going to be a quick episode.
I remember driving home that day from the Doctor Office going through a world of emotions. I had just bought a new house and had several family members over at the house while I was at the Doctors Office. I remember pulling up to the house as I was on the phone with my Mother and having a break down. My Father and Step Mother approached the car. When they seen the tears and the pain they instantly ran in the house to get my Wife. My Wife came out in full tears not knowing what I had been told. There are problems I told her. It is serious and could require serious treatments. My Wife could not take it. She instantly broke down and started to cry as she hugged me as hard as she could.
Guillame Barre is a syndrome that at some point the immune system sees the nervous system as a problem of infection etc. Most Doctors will tell you that the research still cannot link it to a very specific thing. Many people have got “GB” from a variety of things therefore most Doctors will not point to an exact issue or item that caused it.
Your Doctor is extremely important. There are many ways to treat “GB.” Many of these ways require Blood Transfusions and Plasma Exchange but many of these treatments can have huge repercussions. As my Doctor has educated me, there are situations where whiling getting the blood transfusion of plasma work done, patients have suffered from strokes, heart attacks and in some very few cases have even been fatal. This is very important to note because many Doctors take these reactions seriously however many Doctors are not too concerned about these things because it has not happened in their practice. Although I am not a Doctor, I have been told by 2 Doctors that this is serious and should not be treated lightly.
