Reply To: Your Progression of CIDP

August 2, 2013 at 2:19 pm

My story seems typical of many I have seen. It started about eight years ago with some numbness in my feet. A neurologist diagnosed it as “idiopathic” (doctor speak for we have no clue). It gradually got worse impacting my gait with some finger tip numbness and weakness. After about five years of progression and frustration with mediocre neuologiasts was referred to University of Colorado Horpital where it was diagnosed as CIDP.
Along the way they tested me for multiple forms of cancer (bone marrow, spinal taps and other wonderful events). They have found high levels of large cell protiens (IgG, IgM and Kappa) which are monitored every six months. They have not changed over the last three years. I hve found some literature that indicates a correlation between CIDP and those protiens but do not know which came first.
When first diagnosed they gave me predneson but that had bad side effects and actually made the symptoms worse. I then started high dose IVIG treatments monthly which has stopped CIDP progresion. There has been some minor improvement but very minor. I do tolerate the IVIG well with no side effects. I am happy with IVIG to this point and assume it will need to be continued to keep the CIDP under control.
I am curious about Plasma Exchange when compared to IVIG but have little insight as to which is better and relative risks.
Good luck with your treatments.