The Truth

June 14, 2007 at 10:55 pm

To tell you the truth I don’t think there is one truth. And from what I am gathering it seems that this condition is a hit or miss thing with no predictability or certainty. My neuro has been pretty honest about this and admits that they are just trying treatments that have been known to work in similar conditions and don’t really have a clear picture of CIDP. I was diagnosed around 5 years ago and we had to see what the pattern of development was for me. In other words, I seemed to have a progressive type rather than the remit. kind. However, I have noticed that I do have bouts of extream exhaustion and weakness and it takes a few days to feel better but I still have a baseline of weakness. I too can still walk, type, write etc. but I am finding duration to be an issue. And tonight I took my dog for a walk without a cane and found I got flappy footed, my legs felt like jello and I got really winded. I had a hard time catching my breath. Very differant from even 6 months ago.
Luckily I can’t be put on steroids because of my diabetes so I tried IVIG but got sick from it. I am now tolerating chemo but not having any major changes or improvements. My guess is that each one of us are sort of guinne(sp?) pigs and whatever we go through is how the medical profession will eventually define this more clearly. I think we are our best source of understanding. I know this doesnt help but it comforts me to know that we have eachother and not just doctors. Hang in there and dont hesitate to speak up to your doctor about your sense of this.