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Autoimmune Diseases | Last Active: Oct 4, 2023 | Replies (544)Comment receiving replies
Replies to "Thanks. I have only seen my internist, psychiatrist, integrated md, ... a rhumatologist scares me bc..."
@kellye5 Your statement about more than one doctor finding nothing wrong hit a note with me. I have known for 70 (seventy) years that something was wrong. I have gone up and down with weight, brain problems, and every organ I have left has been diagnosed with some problem or another. You can read my story free at https://bit.Ly/1w7j4j8 "Amyloidosis Dossier..." Probably 60 doctors have told me there is nothing wrong, that the lab reports were not reliable, that I was "psycho", the medicine was made in China, etc. But now I think I know the truth. I have a form of Amyloidosis. The weight loss, and the lab reports, and even a few of the doctor reports have said as much. Anyway, I think you should go to the Mayo Clinic in Rochester. They are better prepared to handle this. In the meantime, watch and learn from their videos and other writings. Especially the Grand Rounds videos. Ask your doctor to watch the one "What the doctor should know about Amyloidosis." And you watch it as well. And the others. Anyway, what you describe fits Amyloidosis, especially Hereditary Primary Systemic Transthyretin Wild Type. (short form: hATTRwt). There are probably a couple thousand mutations of Amy, although we don't know all of them yet. One great book on the subject is from Mayo's Morey Gertz, MD, "Amyoidosis - Diagnosis and Treatment" It is expensive, but well worth the money. Also, Kenneth Kee has a couple, and NIH.gov has a stack or two articles and papers. Don't rely on your doctor to be up to date. Study for yourself, and find a strong hematologist.