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Oct 09, 2009, 09:00 AM
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Member Since: Jun 2007
Location: Chicago, Illinois
Posts: 5,518
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It's like Alzheimer's of the entire body - the same amyloid protein that attacks brains, but with me it's produced in my blood/bone marrow and distributes the plaque everywhere. It's in my nervous system, causing polyperipheral neuropathy and autonomic neuropathy (AN). The AN causes GI problems, orthostatic hypotension, and heart rhythm disturbance. It's in my kidneys, causing nephrotic syndrome at this point. It's in my heart - dilated aortic root at risk of aortic dissection. It's in my eyes, causing corneal dystrophy and eventual blindness - my doc is amazed I can still see. My face has also become distorted and mostly paralyzed.
It's also settling in my brain and is causing dementia - I forget sometimes how to open a door, pick up a spoon, or write letters and numbers. I can't follow directions. I used to be highly organized and worked well under pressure. During my "episodes," simple tasks like putting clean dishes away is a major task for me. I'll look at each object and it looks familiar, but I don't know what it is and where it goes. Spoons will get placed in the refrigerator or in the cupboard. When I'm forced to act quickly for one reason or another, I completely freeze. I'm quite certain if my house caught on fire, I'd freeze in place and have no idea what to do.
Any form of surgical procedure will backfire - the trauma to the area will cause the amyloid to speed up and overproduce in that area.
I don't qualify for a bone marrow/stem cell rescue because my type is hereditary - the gene will continue to instruct my blood to produce this protein.
Thank you for asking, and thank you for your well wishes. 
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