When my Neurologist diagnosed my PN, he was just curious enough to run some blood tests, and from the results he obtained, he sent me to a Hematologist. The hematologist ran a battery of tests, including a bone marrow biopsy. The results of his testing was that I have Waldenstroms Macroglobulinemia, a rare form of blood cancer.

With that diagnosis, the Neurologist backed off, and allowed the hematologist to begin treating the Waldenstroms. They both concur that the PN is a presentation of the Waldenstroms, and that when the WM is brought under control, the PN will fade away as well. (Hopefully) So far, with only a series of 4 treatments with Rituxan, the IgM count has continued to rise. Initially, right after the last treatment, the IgM had been reduced by only about 10%, (7,700 down to 7,100) For the next series of Rituxan, the Dr. has added Decadron, a steroid, to assist the Rituxan. Hopefully, there will be a much larger difference after the next series.

The PN has not decreased by very much so far. Days can be good, but by nightfall, it is a different story. And, yes, the anguish can be devastating. I know there are times when it takes a Xanax to help out the Nortriptyline just to get some semblance of a decent nights rest.

Good luck to you in your search. And, yes, it does take patience. That's a quality that I run very short of most days. I haven't learned to "put away" the pain yet. But, I'm darn sure working on it.