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Hi Micheline,
My 11y/o Kevin had all that you do and after the bladder came constipation and then breathing, that is when I went into psycho mode. Our podiatrist of all docs hooked us up with current doc who suspected gbs over the phone and ordered us to er for an l/p and it was confirmed. Have you had ncv/emg and an l/p? If all of those are normal, is it possible for him to write something to the effect of cidp based on clinical presentation and deterioration? Then reccommend ivig and insurance should approve it. Then if there is improvment, the ivig could act as the diagnostic tool. If he is reluctant to do ivig and is SURE it is not GBS, steroids could be an option. Cheap, as this seems to be an issue for some docs, instant results for some, but not without side affects. Weight gain, mood swings and over all weakness for some. It takes a while to get off of them too. But is you cannot get into another doc quickly and he is reluctant to do ivig, this could be an immediate help. If the doc sees it works, maybe he could introduce the ivig then and begin to wean you off the steroids. Has ms, transverse myelitis, cmt, all been r/o? Regarding the arm pain upon waking, you could have just slept funny if it has gone away, sometimes it is easy to fall into the trap of attributing everything to cidp. I do it too, but have gotten better. Kevin woke up the other morning complaining about his arm and right away I assumed cidp, not thinking about what a mad man he was in the pool the day before with his friends. He has been complaining he is tired the last 2 days and since we are on day 35 of a 30 day cycle, I am in panic mode. I too have been very tired , quessy and dizzy, so have some other people we know, so maybe something is going around and I have to after 22 months remember everything is not cidp, so, your arm may just be funny sleeping! Good luck in trying to get your doc to listen. We will pray for you. Once you get a dx and a treatment plan, it just becomes another thing you have to do, I would say we are about 60% at the point where it is no big deal compared to how bad it could have been or how bad others have it, at least cidp has medicine. Not to say I don’t get pissed some days, but I try to think about the good stuff more.
Dawn Kevies mom