You know, I keep wondering why he doesn’t do an EMG but I think it’s because most of my symptoms are cranial nerve related, at least the troubling one. My case apparently has a strong affinity for the cranial nerves with problems from nerves IX-XII and very little weakness seen in most GBS cases. That plus the steroids working so well followed by a reemergence of symptoms exactly when the steroids begin to wear off has him firmly convinced its autoimmune, but not detectable by the typical blood tests. He also offered me immunosuppressants plus steroids but he said that I really shouldn’t have steroids more than 3 times a year and it was too soon after the previous steroid infusion to do it again.
I’m inclined to try IVIG just to see if it works for me. As for insurance, it’s Kaiser, so anything the doctor does in Kaiser centers is automatically covered. It’s a blessing and a curse. A blessing because I often worry little about insurance coverage. A curse because it’s damn near impossible to get a second opinion – everything is managed care.
I’ve got a very non-supportive spouse who, even in the face of all this crap, thinks that I just am overblowing it all. It sucks how hard it is for people to understand this disease. The good news is, since you are newly diagnosed, there seem to be a ton of treatment options and while it may take some time, you’ll find the one that works for you. Get better soon.
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