Reply To: questions from recently diagnosed CIDP

March 20, 2013 at 3:21 pm

sorry to hear what you have been going through… Im not sure if the fact that your ankles are strong that would affect your nerve biopsy – I would think it would though.. Did your EMG/NCV show demylenation/typical CIDP??    I hear the results of the nerve biopsy can be patchy- I would think if your ankles aren’t weak it would increase the chances of the biopsy being normal dispite you having a disease process going on.. but who knows!?!   They did an epidermal nerve biopsy on me (it is a less invasive skin biopsy).. I guess it’s a new way of doing it. .. that’s what helped them with my diagnosis.. it was very minimally invasive – they jsut take a punch biopsy of three areas (ankle, calf and thigh).. mine came back significantly abnormal.. I think it was then that my neurologist said – huh, something weird is in fact going on- im not just totally crazy! 🙂

I get IVIG.. I tried only three days of prednisone, they started me out at 60mg, which was just too much for me – other people on here might be good to ask if they started out at lower doses and worked up, or higher doses and tapererd down.. The 60mg was too much during an exacerbation and I felt it worsened me.. I wish I would have tried lower and worked up. Otherwise, I hear great things about it working great, especially along with an immunosuppressant like cellcept or immuran . Good luck!