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srodriguez (@srodriguez)

I feel like I'm dying

Digestive Health | Last Active: 5 days ago | Replies (78)

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@oldkarl

@srodriguez Hi, my friend. So much compassion for where you're at with you Light Chain Amyloidosis. Like me, you may well have Multiple Myeloma, or Gelsolin, of plain old Amyloidosis Light Chain. We have about the same signs and symptoms. And so do 4 of my sisters, and a fifth and her daughter have died of it (sudden heart death) And some other nieces, etc. Now, if you have Gelsolin, it is perhaps one of the slowest cloning autoimmune protein dyscrasias around. It often begins to be really noticed about age 50, or thereabouts. I am now 78, and mine is really hitting heavy now, but I am still looking at the green side of the grass. So what is it? First, it is primary and autoimmune. Started with your conception with a single protein from your parent's liver into their semen or egg, not with something else. Second, it is systemic. After the single cell clones itself a couple times, it dies in 2-4 hours, then deposits itself in ANY tissue in your body. Thyroid, brain, toe, skin, whatever. Third by the time you are 50 or so, it is dumping dead fibrils (little tubes made of dead pieces of proteins and filled with water) in your thyroid, brain, heart, wherever. Four, it will kill you if you don't die of something else first. A jealous lover. Car Accident. Almost any illness you have from this point on can be traced to having some mutation of your Amyloid in your body. There are some really good signs for the doctor to spot. You have some already. IGg and IGm deficiency. spine is squished. horrible pain. diagnosed with my autoimmune deficiency. Every time I eat, I feel so full and so sick. This is called early satiety. Anyway, the rest of what you show all fits. Now, there are new meds coming in just now to help slow down the progress and extend your life perhaps. Look up the Amyloidosis Foundation amyloidosisfdn.org on the net. or look on various sites. Find a top 1-AAA clinic and go there for diagnosis. Finally, most of my record is found, free, at https://bit.Ly/1w7j4j8 "Amyloid and Old Karl" The safest format is .pdf, and almost any computer can read it. But most of all, enjoy your life. You may die suddenly this afternoon when the fibrils get into the nerve between you brain and your heart. But, and more likely, you may live another 40 years. Watch Dr. Martha Grogan's videos on Mayo, both the patient and the Dr. sides.

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Replies to "@srodriguez Hi, my friend. So much compassion for where you're at with you Light Chain Amyloidosis...."

Thank you Karl so much. You have given me more information in just five minutes than any doctor I have ever seen and I have been going to doctors here in Boston for more than 40 years. I will look up all the information you have just given me. I'm not happy to know this could be my end but I am happy to know what is happening to my body. I use to be a very active and a very happy person and then, one day I literally just went down and never got back up. I have one daughter and she too has the IGg deficiency. We just learned this. My mother is 80 and has Leukemia and hemolytic anemia, which they claim she is now dying from. She also has IGg deficiency, So everything you have just told me seems to be right on the money. Thank you again Karl.

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