She clearly has multisystemic manifestations of familial TTR amyloidosis. This particular gene abnormality is among the worst with progression of disease and systemic involvement.

Why do I read the notes after our visits?

Dr. Judge is amazing! He wanted to talk to Dr. Polydefkis in Baltimore and see what they can do to also get me on a silencer, because he doesn’t feel comfortable just having me on Tafamidis. Dr. Judge has already emailed me back and they want me to get a skin biopsy and it will be sent to Dr. Polydefkis to analyze it. Steps in the right direction a Dr that doesn’t take no for an answer.

Today my body is in full in revolt. I am so numb and in pain and my stomach seems to hate anything I eat.

Trust! Eyes on Jesus and not the storm.

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