Diagnosing amyloidosis: Why monitor (PYP scan) instead of biopsy?

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

@babesmom, have you received the results of the scan? What led to your doctor wanted to test for amyloidosis?

Haven't received results yet
The doctors said with all the tests I have had done (numerous) my heart is fine, my lungs are fine, blood work is always good however I still get short of breath, stamina decreases every month and I am very tired so they are testing for rare diseases

Hello. I can speak a little bit to this, as I am in the process of diagnosis currently - in fact my myocardial biopsy is scheduled for tomorrow. My advice to you is to keep pushing for answers. Someone described the process to me as: The amyloid diagnosis ultimately ends up a bit like a puzzle; where we put all the results of your testing together to try to form 'the big picture'. The gold standard is a biopsy, which we can do for the heart as well, called an endomyocardial biopsy. However, we usually start with the least invasive modalities (imaging tests, blood work, genetic testing) to see if we can get to the diagnosis.
So you will need to be very patient. I ended up in this position myself after having a MINOCA (heart attack) which led to the discovery of my heart damage -- which had been causing all of the severe symptoms similar to what you describe, and I had been accepting them as part of the aging process, and my body (I am only 57) -- mind you, I also have existing diagnosis of MGUS. I went to the ER 3 days after my cardiac event and luckily the cardiologist who was reviewing my films (echo) saw something he was concerned about (often goes overloooked) and looked further with a cardiac MRI. If you've done some research you will see that these amyloid diseases often get overlooked due to symptoms looking like other diseases, but Drs are being trained to look out for them now. ATTR can be ruled out with a genetic test as well. It can all be a bit confusing and overwhelming for sure. I am hopeful to get some kind of answers, because that's what we all really want, answers, and to feel better. To get better would be great! I have a lot of gastric issues that so far, I have gotten zero answers on - but I suppose we need to tackle the heart first, and if amyloid is there, I will have a team and can move into investigating the abdomen more.
I don't know if this is helpful or not, but feel free to ask any questions 🙂 and keep advocating for yourself!

A skin small skin biopsy from a lower and upper
body site done by a skin specialist could be helpful and non invasive.
Local anesthetic and a single stitch.
The doctor needs to capture some of the lower fat layer to get for special staining analysis of the tissue.