I have a three year old with cidp and I have thought a lot about what caused this. Selah had Fifth’s disease and they believe that this caused her gbs/cidp and her arthritis. She is also a very thirsty person and we gave her a lot of propel water because we did not want to give her juice and then realized that propel contains Splenda. I have researched artificial sweetners and they are terrible. The quality of the water at our house is also terrible and our local water dept still has not fixed it. It contains a lot of sand in it which the health commisioner says won’t hurt anyone.
Hello again Alice,
This is my third response, but I just wanted to add that though I don’t know if STRESS can cause GBS/CIDP it can play a BIG BIG factor. I do STRESS OUT big time and I have gone through MAJOR stresses, just to name a few, the death of my “baby”, my beloved dog Stanley, my father’s death in 2000 (progressive years for me) and my mother’s death 2007. The GRIEF and STRESS of losing my mother destroyed my motivation to continue to strive to recover.
Hello again Alice,
I really don’t know what caused my CIDP, but yes, I have wondered about it. I worked as a housekeeper in a hospital and the last area I worked in (I had just retired before CIDP started) was Nuclear Medicine, was I exposed to something there, I don’t know.
I really lean toward the flu shot with me. I did not have CIDP in 1997. Since I was a hospital worker and it was almost required, I got the flu shot Nov. 1997. I started getting symptoms in March 1998. Not being diagnosed yet, I got the flu shot in Nov. 1998 and about a week later I could no longer walk.
I am open to talking to you when you are ready to start writing that book. You might want to dig up CODYSTANLEY’S CIDP STORY, which jfitzen posted for me. I am one of the old members, I go back to the old forum we lost to a hacker. I had a second part posted, JUST AS I AM NOW, but since my hands can’t do a lot of typing someone posted it for me and I can’t find it. I want to get that second part removed because I can re-write it much better.
My symptoms first started in March 1998 and I wasn’t diagnosed until December 1998. I don’t know what caused my CIDP to happen because though I was never a physically fit person, I have always been healthy. So it’s like healthy one day and then just slowly running down like a clock until I ended up in a wheelchair.
I do remember that I had made a move and the water was different where I moved to and it was making me sick, mostly diarrhea, but I usually have gotten sick from a change in water so that was nothing new. One of my infusion nurses thought the water caused my CIDP. With some things my memory has been effected, traumas can do that, and I draw a blank. I do remember that somehow my heart was effected and I had to wear one of those things you strap on to monitor the heart. I have no memory of what was wrong though because I don’t have heart problems.
I guess no one really knows for sure what caused our CIDP. In the beginning, when I was first dx with GBS, I was told that it was from a cold/viral infection I had battled all of that winter. But when I saw my dermatologist last summer, he said he was not surprised that I have CIDP as I had battled terrible allergies & ecsema from birth until I was 21. Both are autoimmune, so he said I was probably predisposed to another autoimmune illness such as CIDP. Also said he had 5 other patients with CIDP, but could not give out any names. I came down with CIDP at age 48, long after my childhood issues had been resolved. But I would feel better if I knew it was something already in my system that caused all of this…
Hello again Chaya,
A doctor would not agree with my other theory, so I hesitate about mentioning it as a cause, but one of my infusion nurses agreed that it might be possible. I had made a move about three months before I started getting sick and the WATER in my new home was different. Drinking it caused diarhea and made me throw up until I changed to bottled water and stopped drinking the tap. Since it made me sick and then a few months later early signs of CIDP started, I sometimes wonder, could WATER do this???
I think that very few of us, or perhaps none of us, know what causes CIDP. We only have theory’s. I was healthy, I don’t know what caused my CIDP, but I strongly suspect that the flu shot played a part. My other theory that ties in with when the syndrome started would be laughed at.