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.
I wouldn’t recommend a Sural Nerve Bx after my experience.
I had mine in Feb 16. By the night of the op I was in agony with a raging infection I got in theatre. I am still, 15 months later, suffering. My ankle is kind of frozen with limited movement, its stiff and painful and twice the size of my other ankle…STILL!
To make matters worse, the nerve they took was too damaged and thin for the Path Lab to use so I had to go back again in Mar 16 to have it redone.
Results showed that both the small and large fibres are affected.
Also, the “numbness” people talk about after a Sural Nerve Bx is totally different to Neuropathy numbness. The whole heel and foot near is dead. Not just numb…dead as a door nail. Totally different kind of numbness. Trust me. I had your attitude to begin
Its been over a year since I posted regarding the nerve biopsy. I decided against it, and ended up getting an appointment at Johns Hopkins. To keep it brief, after all the testing and two trips to Baltimore, my Doctor does not think it is CIDP. He also ruled out small fiber neuropathy with a skin punch biopsy.
I am going back in July for another MRi of neck and spine. There were artifacts in my original images that they could not distinguish. My original images were done locally in S.C.
He thinks my numbness and weakness is originating in my cervical spine. Could be a narrowing that is pressing on the nerves, but not eliminating something autoimmune going on, as I have had remitting / relasping symtoms since 2003. So, I still don’t know why my feet and legs are going numb. Frustrating.
Oh, as one who has had a aural nerve biopsy and a muscle biopsy, I would HIGHLY!!! recommend a HUGE NO!!! To the nerve biopsy!
I’ve had a lot of painful things in my life (i.e.) spontaneous collapse of cervical spine.
That is a nothing burger compared to the hellish pain - 6 months and still going strong of this barbaric surgery.
My advice: JUST SAY 'NO!