Reply To: need spome advice on this cidp rollercoaster ride??

February 22, 2012 at 11:23 pm

the pe and ivig both gave me very minimal improvement. I hope it’s not just that im expecting too much?? Even after having ivig for 2 and a half years my ncv/emg has not improved. on the good note, it didnt get worse. It seems the ivig is keeping me from getting worse—but not quite enough to help me get better. that is why im thinking maybe something with it. Or maybe since having the PE I will feel more effect from the round of ivig tomorrow.
Dr Dyck @ Mayo was my second opinion and comfirmed CIDP. He did a lumbar puncture which was slightly elevated and a sural nerve biopsy which showed a pattern of demynilation and remylination, inflammation. He agreed with my Dr on the “atypical cidp” diagnosis. so i just assumed they were both right—but who knows.
I have started getting the ivig at my small local hospital and for right now am back on the 2 days every 6 weeks loading dose again–so it’s not bad.
between now and my next appt i really plan to do some research and try to see about what might work with or instead of the ivig.