Everyone here who has

November 20, 2007 at 8:59 pm

responded before me and those who will after me-all of us know and have learned how fragile we can become.
We each have been ‘hit’ by this immune thing is ways we learn make us either fragile and/or tough. Often both in that we fight it to the best of our abilities. Most frightening is the ‘dealing with the docs’….they sure don’t tell you much do they? Not near enough of what you want and need to know, when you think you need to know it….often what information we are given, is either too little/late or not in chunks we can take in at that particular time.
I have found that learning as much as I can about GBS & CIDP has been my own defense to challenge doctors to get up and do their own homework and get busy! The learning has helped me understand and cope with all the frustrations that come with this territory, then deal with it as best I can.
As for recovery, there are soo many variables with each of our recoveries, and the degrees we recover.
Sometimes I feel it’s like buying lottery tickets? When you buy, there is the hope, if you don’t win? There’s always the next time….in our case, it means tomorrow, and the day after, and the next one. These days are precious as it means we still have our gift of life to live the best ways we can. Share your love with your husband, it is hard to sort all this all out – I know! Have you talked to John’s doctor about your own stresses thru all this? You might benefit in the talking to not only those here, but to others in situations similar in your area. [You would be surprised that there are others-there are]
As for prognosis? Get copies of all John’s medical records and send them to someplace, such as Mayo or Hopkins for a ‘second opinion consulatation’. It might cost dearly, but it also could add insight into possible future therapies and treatments. That other opinion could also be cheaper in the long run, as docs are notorious for being ‘super cautious’ with GBS and CIDP.
I suspect I am not speaking for myself only here, it’s like life has taken the rug out from under your feet! One day you are going thru it all, the next WHUMP! You have a heck of a serious problem….no warning no nothing.
My heart and my hope are with you both.