The fact that I am now writing about neuropathy and not CLL says a lot. Ibrutinib is awesome stuff.
Tests performed by Dr. Tanya Lehky, a neurologist at NIH, produced results that she called "consistent with chemotherapy damage" (and not much different than results from pretty much the same test done locally back in October, she said).
But that fact that something like 24 months had transpired between the final infusion of FCR (fludarabine-cyclophosphamide-Rituxan) and the onset of neuropathy in my feet tends to argue against FCR being the culprit. Usually it shows up right away if it is going to at all.
Docs at NIH, having decided that my neuropathy was probably not a result of Ibrutinib (me being the only one), suggested I ought to have an MRI done of my lumbar region to see if something weird was impinging on nerves as they headed south to my feet. A doctor there wrote a prescription for the MRI, to be performed back in the Albany, NY, area.
Then came the "medical bureaucracy game."
Medicare is now my primary insurance. Fine. Capital District Physicians Health Plan (CDPHP) is my secondary insurance. Fine. Except that CDPHP, for some inexplicable reason, farms-out its approval process for such tests to a third party called Medical Solutions company. Not fine. Medical Solutions refused to approve the test because the NIH doctor who wrote the prescription did not have an IRS tax number! Of course he doesn't. He's not in business to make a profit.
Got that? Lack of a TAX NUMBER stands in the way of getting a medically approved test.