Met with my Neuro on Thursday, and decided that my 6 months of Ivig did not prove to be effective for me. He would like for me to have a nerve biopsy to confirm that my neuropathy is CIdp. His reasoning is that since my last flare up in 2007, I went over 7 years symptom free (with residual numbness). He wants to make sure that this is not a new condition/neuropathy ,separate from the Cidp, The biopsy will also help him to determine what treatment might prove to be most effective.
It looks like immunosuppressants or plasma exchange are likely my best options. However with the risk associated with the suppressants, and the invasiveness of the PE, he would like more information before moving forward.
I have read that some folks that have had the nerve biopsy say that they regret it, due to ongoing nerve pain or numbness. I already have the numbness, don't want the pain. So that is also a consideration.
I am also considering getting a second opinion. I called Emory Medical in Atlanta to schedule an appointment with the Neuro that diagnosed me in 2003, but he has retired. Since I would have to see someone new, I am thinking of trying to see if I can get an appointment at one of the GBS-CIDP Foundations Centers of Excellence. Vanderbilt or John Hopkins are the two that I am considering.
I would appreciate any feedback or suggestions that members of this forum might have.