This post is way above my head, also so much of the time I was at my very worst back in 2002 it was actually my husband listening more than me. But at Mayo where I was inpatient for 3 months after my very rapid decline, I remember having so many tests (bone marrow biopsies twice, nerve root biopsy which was actually a surgery on my back to remove spinal nerve roots, sural nerve root biopsy) all done just so they could rule out lymphoma & leukemia.
When I switched care to the U of M after Mayo said they had exhausted all treatments (PP, IVIG, & steroids), I did ask my new neuro about rituxan. I remember him talking all about the B-cells vs. the T-cells, & he said that rituxan would not work for me. Then he proceeded to give me the large dose cytoxan protocol. I am very happy that it arrested my CIDP, but often wonder if the damage done those first 9 months would have been less had I been given this protcol much sooner.
But I was given PP, IVIG, & steroids all within the first 3 months, PP right away in April while I was still fully functional, & IVIG once I has had deteriorated to a wheelchair. Why is it that some seem to suffer axonally damage so quickly, & others just myelin sheathe damage, even though their nerves can be attacked over & over again? I think I knew from the very beginning that my damage would be axonal, even though all of the neuros at Mayo were telling me that I would get back to normal. I guess only we truly know what we are feeling?
Also, given a choice I would much rather have sensory damage as opposed to motor damage. I never minded being “numb” from the neck down, it is the lack of strength that I mind the most. Also, I assume the fatigue would be much less with sensory damage?