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Old 07-25-2009, 10:17 AM
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Gyrene Gyrene is offline
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Join Date: Jul 2009
Posts: 42
15 yr Member
Gyrene Gyrene is offline
Junior Member
Gyrene's Avatar
 
Join Date: Jul 2009
Posts: 42
15 yr Member
Default Finally, a diagnosis

After dealing with PN for a couple of years now, I finally have found the right doctors to aggressively persue the reason for this devastating condition. I thought that I was going to be classified as one of the appx. 25% for whom there is no known cause, and that I would just like so many others here, deal with this condition for the rest of my life.
My neurologist that diagnosed the PN in the first place, went a step further, and ran some wierd blood tests. From those test results, he scheduled me an appointment with a Hematologist for further study. The hematologist ran a multitude of other blood tests, and a bone marrow biopsy as well. From these results, he diagnosed me with what is called "Waldenstroms Syndrone" which is a condition exibited by a very large IG "M" count. Basically, a mutated cell, which tends to reproduce, but not die out like other cells. This one has build up an enormous amount of itself, (normal = 230, mine=6,500 per some measurement of blood. It's a form of lymphoma. So, now we know, I have blood cancer. As it turns out, about 6 years ago, a new drug called Rituxan was developed to combat non-Hodgkins lymphoma. It works as well combating what I have. According to the info I have found, this drug finds the mutated cells, wraps itself around them, and the bodies immune system sees this as an invader, and destroys the cell. The treatment is given intravenously, and takes from 4 to 5 hours for the first regimen, and thereafter, only 1 1/2 to 2 hours, depending on how fast the body can assimilate the drug. There are from 4 to 6 sessions required.

I heard last night, on the Fox network, in an interview with former presidential candidate Fred Thompson, that he has had the same condition appear in his life, and was given the same treatment for it. His lymphoma is in remission as of this date. So, I am hopeful.

Hopefully, this info may be helpful to others who are seeking answers to PN
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"Thanks for this!" says:
Megan (07-31-2009)