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@A MyAmyloidosisTeam Member thank you so much, I really appreciate that. Yes, I will definitely stay in touch. Monday I have a nuclear medicine test on my heart to see if Amyloidosis is present I assume. I’ll keep you posted after that appointment. Praying all is well with you on this journey.
Ok Nita found you. We're both young, 50s with same variant so let's stay in contact.
My cardiologist finally got back to me through her nurse of course. One sentence. "Yes patients with cardiac amyloidosis can have chronically elevated Troponin." That's it! We just gotta be diligent about our health ourselves. I hope you're doing well and coping positively. I immediately just followed up with a Q, how about ECGs since that wasn't addressed.
Have a good day
GStrong
@A MyAmyloidosisTeam Member I have the same Val142Ile also known as V122I.
How's it going Nita?
@A MyAmyloidosisTeam Member I’m with you regarding reading my own results. I just feel sometime like I got this rare disease that seems extremely urgent on paper but the doctors are not in a hurry to deal with. I had a kidney gene panel because of issues with my kidneys and I was positive for HATTR back in June. I’m just now doing other testing so, I have learned to be proactive when it comes to my health. I’m going in for the nuc med scan this coming Monday and the results should be available Tuesday/Wed next week.
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