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Date Posted: 21:01:16 07/03/08 Thu
Author: Ed Beyer
Subject: Agent Orange and Primary Amyloidosis

ALERT:
Primary Amyloidosis. Just by chance I had a double balloon endoscopy done at Mayo Clinic. I had at least two years of stomach cramping and blockage. It seems that there was a stricture that would get blocked and cause this situation.

At Mayo (a research center for Amyloidosis) during this test they did a biopsy at this site and found Amoylodosis. At the time they did not know if it also included Multible Myoloma. One year ago I went through a stem cell transplant (my one cells were harvested) and two day of high doses of chemo.

When other parts of my body were recalled to be check for Primary Amyloidosis... it was noted that in my routine colonscopy that the polyps were also diagnosed with Amyloidosis .. however two years prior they did not detect it then. It is because it is such a rare disease that no one would consider testing it with the "CONGO RED STRAIN" for Amyloidosis.

Also, another symtom for Amyloidosis is carpal tunnel syndrome .. which is so common today .. who would even think to test for the Congo Red Stain???

How can we get the VA to really do a research on this rare disease??? How can we warn our Vets to ALWAYS ask their doctor to test everything for Amyloidosis and use the test: Congo Red Stain????

If you have any direction in this at all, please let me know. I have put a claim into VA for this ... but as you know it is still under research!!
Meanwhile, I am not working, post stem cell, and very fatigued, just had both arms repaired for carpal tunnel, and two bone replaced in my hands for arthritis.

PLEASE fellow vets get your colonosopy and if you have polyps have them tested for Amyloidosis and use the CONGO RED STAIN for testing on everything ... carpel tunnel, kidney, liver, heart, AND REPORT IT TO YOUR VA CENTER AND PUT A CLAIM IN.

THIS DISEASE IS SO RARE THAT WE MUST BRING IT TO THEIR ATTENTION.

Ed Beyer

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