Diagnosing amyloidosis: Why monitor (PYP scan) instead of biopsy?
I have many symptoms of amyloidosis. I had a PyP scan an of heart. Result was equivical- meaning not not neg, but not pos either. My heart Dr wants me to have another scan in 6 months. I want a biopsy done now, rather than wait. Am I right wanting in wanting it now? And can't I have a biopsy from abdominal tissue rather than just heart tissue biopsy that would give me same results as the tissue from the heart?? Am I being i.patient to want this done now??
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You're welcome. I hope you find some answers.
I have AL Amyloidosis, there is another type called TTR Amyloidosis that has the symptom of carpal tunnel. I think the TTR Amy just affects the heart. I have amyloid in my heart and stomach. My symptoms were fatigue, swelling of ankles and unintentional weight loss.
I also live in Michigan; between Lansing and Grand Rapids.
What a small world this is. We now live in Frankfort, southwest of Traverse City, but until 2 yrs ago, we lived in Battle Creek for the past 53 yrs. We raised our family there.
I have also had unintentional weight loss of 60 lbs, and swelling of my rt leg alot. Lately I have been have alot of pain in my rt leg and I'm my hands just horribly. I have just started seeing a new family Dr , and I am finally getting someone who will listen to me and not just brush my symptoms off .
I had lab work for Amyloidosis and everything was good.
Does that mean I dont have it?
Going in for PYP scan next week