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I was diagnosed four years ago with wtATTR and have absolutely no heart involvement whatsoever. I have even had a heart biopsy which was weird being awake during the whole procedure. I have been on Diflusinal and have been told by my doctors that I will probably never have cardiac problems. I was lucky that I was treated early and that I have a great team at Boston University Amyloidosis Center.
Hard to say Joseph, this crippling disease has many forms and the medical profession in general seems to have difficulty in identifying it at an early stage. Often it is only when all other forms of treatment fail, does the penny drop. In my case I was diagnosed with Geographic Tongue, normally cured in 6-8 weeks, I'm still affected four years later!! I am of the opinion that amyloid malfunction is more widespread than is generally believed, that there are many people out there unaware of the cause of their suffering.
That's a really important question. Wild-type ATTR (ATTRwt) amyloidosis is primarily associated with the heart, and most people who have it do experience some degree of cardiac involvement. However, the disease exists on a broad spectrum — some people have very mild symptoms, and others may not notice anything significant Show Full Answer
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