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Amyloidosis and Polyneuropathy?
Autoimmune Diseases | Last Active: Oct 4 5:38pm | Replies (6)Comment receiving replies
Hello @gala75, Welcome to Connect. I know it's difficult to be in so much pain and looking for answers. @oldkarl has discussed amyloidosis in other discussions and may be able to offer some insight or suggestions. You will notice that we added to your discussion title to better describe the discussion and hopefully bring in members with some experience to share with you.
While we wait for other members to join in, here are a few links I found that may provide more information on the topic.
Hereditary ATTR Amyloidosis Testing & Diagnosis
— https://www.hattrguide.com/diagnosing-hattr-amyloidosis/
Amyloidosis Foundation
— http://amyloidosis.org/facts/al/
Diagnosis of amyloid neuropathy
— https://pn.bmj.com/content/19/3/250
You mentioned having a lot of different tests without a diagnosis. Have you thought about seeking help at a major teaching hospital or health facility like Mayo Clinic?
Replies to "Hello @gala75, Welcome to Connect. I know it's difficult to be in so much pain and..."
Gala75 !!Actually, I am happy to hear from John and from you. I have Amy.. ATTR, Gelsolin with some attachments. I have been fighting it all my life of 83 years. Incidentally, some of the most enjoyable time of my life has been in Louisiana in NO, Baldwin, Houma, Franklin.... We have a daughter and grandchild in Baton Rouge. Anyway, First, some info every patient ought to have. The International Myeloma Foundation (TheIMF@Myeloma.org, or just Myeloma.org) has a classic little booklet, free, called "Patient Handbook for the Newly Diagnosed", prepared by Brian G.M. Durie, MD, February 2022 Edition. I suggest you order about 10 or 20 of these. They are free, so give them to your doctors, family, neighbors, whatever. Especially to your Primary Doc, and your pathologist, and your Myeloma specialist if you have one. Read it so much you nearly memorize it. That will give you more than you will ever get from a local doc, just because that is Durie's Specialty. Then get more of the books, and give them to every doc and family member you run across. The Telephone is 1.800.452.CURE (FAX: 1.818.487.7454) And tell them I sent you. If you have insurance (Medicare, etc.) and can do it, get your insurance to pay for a complete whole genome analysis. If you can only do a little, contact Sequencing.com, or AmbryGen.com, or NebulaGenomics.com, or ask your local hospital to put in a grant to get you a partial analysis, called an "exome", or about 1% of total. It will give you a lot. oldkarl
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I have an HMO Advantage coverage and would not be able to handle the cost outside of network. Is there anything in Louisiana available?