Knowledge Quest

July 9, 2010 at 11:45 pm

My husband was diagnosed over a year (June, 2009) ago with CIDP. Many of the symptoms quoted in this thread sound quite familiar to his case. Since then, he has been on IVIg therapy every 4 weeks. We changed doctors mid-year, and he had a 1-year follow-up EMG/NCS. The new doctor proclaimed the results were “very disappointing.” He put my husband on a 3-month, 3-week regimen, changed the IVIg brand, and stated that if the “turn-around” didn’t happen, he’d send us to Dr. Harati in Houston, Baylor Med. Center (we live in Austin). Before the end of the trial, we went to Houston. Out of the brusqueness (he really was rude) of the doctor, we did hear something I’ve been trying to sort out. He said my husband’s CIDP was mostly sensory; that the IVIg was working; but that IVIg doesn’t work on sensory CIDP. OK, that doesn’t make sense, does it? If he has sensory, how can the IVIg be “working” if it “doesn’t work on sensory.” Someone please clue me in.
Since there seems to be some dialogue concerning mainly sensory vs. motor or sensorynotor, has anyone received IVIg therapy, or other therapy, that has worked? Again, it has been over a year, and my husband has steadily declined on IVIg. My research, which continues day after day, leads me to question the ability to adequately diagnose CIDP, its variants, hereditary neuropathy, etc. It also forces me to question what is the therapy for that specific disease, which BTW doesn’t seem to be able to be diagnosed? I am one frustrated wife, and the answers don’t appear to be any which way forthcoming. I enter this forum to see if any of you has knowledge of, at least, the difference between straight CIDP and the more sensory type? And, if so, what has your treatment regimen been, for how long, and what have been the results. I’ll tell you this — steriods have been strongly discouraged by all the doctors we’ve seen, because of the side-effects (both long- and short-term).
I would greatly appreciate more knowledge, and if you know of that “greatest doctor/medical facility” you’d recommend, I’d be forever grateful. My quest has just begun, although I’ve been at it for what seems a lifetime. I’ll also let you know at the outset, these are just the beginning of my questions…..