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New Diagnosis of MAC/MAI & I'm scared

MAC & Bronchiectasis | Last Active: Oct 13, 2022 | Replies (349)

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@oldkarl

@sueinoregon Keep plugging Sue. I am also from Oregon, (Lincoln County) Sounds to me like you have enough diagnoses to push for a dX of some disorder that would trigger all these things, probably an autoimmune something or other. There are some things you can be pretty sure of. It is Systemic (whole body), Primary (not triggered by something else like radon, etc.), At your age, 61, you are just getting into the years when these diseases are typically catching up with you. Sjogren's Syndrome, Rheumatoid Arthritis, Bronchiectasis, and now THIS. My RA & bronchiectasis are extensive with a lot of coughing and I am on a biologic immunosuppressive drug, infusion, for the RA. Now, I am not sure but I could easily guess some form of Amyloidosis Light Chain such as Crohn's, Lupus, AL, Gelsolin (mine). (https://bit.Ly/1w7j4j8 under "Amyloid". There are a couple thousand in this category. Mayo-Rochester (Dr. Martha Grogan) or Stanford can help you most. Martha Grogan has done some wonderful videos on diagnosis of Amyloidosis, and they are free. Watch several of them, and you will surely get some great leads. Your doc will need to start with the SERUM FreeLightChain(c)Bindings and have ARUP in Salt Lake City analyze it. They are probably the best in the West. If your reading is >1.5 milligrams protein per deciliter of serum, you are seriously on the right track. if less than .5 mG/dL, protein is not the issue.

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Replies to "@sueinoregon Keep plugging Sue. I am also from Oregon, (Lincoln County) Sounds to me like you..."

oldcarl, thank you for your reply. I've never heard of Amyloidosis. Interesting. It said 70% are men, but 30% is still a possibility. Everyone in my family has autoimmune diseases. I have 3 and we have a son with advanced primary progressive multiple schlerosis. Thanks for the info and I will look at your dx more closely.
It looks like all the Mayo hospitals are far away from me I'm at the south end of the Pacific coast of Oregon. Where do you go? Are they good? Are they specialists with the Mayo clinic? ....I have a lot to learn.