That’s a good question because I still don’t completely understand what I’ve been told (or not been told). Everything I went through, from the beginning to the present is a Long Story. Anyone who wants details, I’ll share, but for now I’ll keep
It short. Pre CIDP diagnosis, I had neuropathy in my feet. It started mid summer, 2004 & was a very slow progression. In Feb., 2005, my PCP diagnosed me with Peripheral Polyneuropathy & referred me to a Neurologist, who
gave me the CIDP diagnosis. I was supposed to get 3 IVIG treatments, 1 per month for 3 months. Each lasting 5 days. During treatment I started progressively getting worse. I couldn’t get up or down stairs walking, so I had go on my behind. I could barely stand & if I was standing in one place for more than a few minutes I’d fall down. I was running fevers & having Profuse night sweating, having to put towels underneath & above myself & changing soaked pj’s.
When I called the Neurologist’s office the nurse asked if I was going through menopause!
Eventually the information got to the Dr., &, long story short, he said because of my response to the IVIG, the neuropathy was a secondary symptom to a larger primary problem. He referred me to Duke. I received lots of testing (in addition to the Neurologist’s testing) & even a splenectomy! Afterwards, following complications from the splenectomy, monoclonal protein was found in my blood. I then received Plasma Apheresis treatments (did not benefit from). I ended up being referred to the Duke Adult Bone Marrow Transplant Clinic & then visited the Mayo Clinic. Both Clinics decided I should receive stem cell transplant chemotherapy. At the time, the diagnosis from Mayo was an “either or” of Multiple Myeloma or P.O.E.M.S. Syndrome.