← Return to Difficulty Breathing & Autonomic Dysfunction w/ PD & Congestive Heart

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@oldkarl

@brittalisse Hi, friend. Sounds as if your mother has the same stuff I have. We are in the middle of testing for some form of Light Chain Amyloidosis, probably Gelsolin, an Amyloidosis from Finland, or perhaps Evans Syndrome. I have horrible spells of pulmonary Dyspnea sometimes. My lungs, although crowded with Amyloidosis nodules, etc., work fairly well, but the Amy fibrils seem to get into the sensory-motor autonomic nerve wires, and interrupt the lung controls and heart controls. And the weight loss is part of it for many Amyloidosis patients. At Mayo, Martha Grogan, Angelica Dispenzieri, and a bunch of others. Since Parkinson's has the same protein deposit pattern as these others, it might be worth the search to expand your reach to the rest of the protein disorders. The videos from Morey Gertz, Martha Grogan, and others at Mayo will teach you a lot. The primary search test will be sFLC (SERUM FreeLite(c) chain from The Bindints Site in the UK. Also search on Mayo for Amyloidosis and Parkinson's, and on AlnylamAct.com. Your doctor can help you with the last. You can also look at my little Amy dance routine at https://bit.Ly/1w7j4j8, under "Amyloidosis Dossier". But again, I have all the stuff you mention, including the pain.

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Replies to "@brittalisse Hi, friend. Sounds as if your mother has the same stuff I have. We are..."

@oldkarl – thank you so much for the reply. I'm really sorry you're going through this, too. It's hard to watch someone you love dealing with something so difficult. I really appreciate the information and I'm going to look into all of this right away. Mayo did test her for Amyloidosis and everything came back negative. I wonder if there are other protein disorders though as you suggest. I'll spend time on this today and will let you know if I have any follow up questions for you. Thank you, thank you. Sending you positive energy today!!

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