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

Posted by honeymamabee @honeymamabee, Aug 3 8:40am

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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mahen | @mahen | Aug 9 4:35pm
In reply to @honeymamabee "Thank you, Thank you, Thank you!!! You have given me answers that I have looked for..." + (show)
@honeymamabee

Thank you,
Thank you, Thank you!!!
You have given me answers that I have looked for and needed. Last Friday, I asked my heart Dr to do a biopsy on me. She said no, and said she was going to do another PyP scan in 6 months. I wanted to flip on her. She wouldn't budge. But then, this is the Dr who said I was just fine 6 months ago and said I didn't need any testing and that I should have many years left. Then 6 months later she does a turn about. My personal Dr said for me to try goi g thru my heart Dr. But he also said that if she would not have biopsy done, that he would see that I got one. Thank you for suggesting what other tests I should have done. I am being treated for heart failure. My afib was surgically corrected. I have unexplained shortness of breath, along with Graves Disease. I had bilateral carpal tunnel syndrome, which was surgically repaired. I am now starting to have neuropathy reay bad in my rt leg, alo g with joints in hand getting ready bad at times with swelling and pain. I could go on, but I think you get the picture. I think all of this is a result of me having covid really bad in January of 2020. As you know, covid was still being denied by Trump and his administration then, until everything was shut down in March 2020. A year and a half later I started getting heart problems, and things continue on a downward spiral since then.
Thank you so much for taking the time to respond to my message .
I hope you are doing well. I live in northern Mich. I will let you know what happens after I have biopsy and a few other tests. Your input means the world to me right now. Thank you for helping a stranger. I will try to pass it on!!
-Sue Rae

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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.

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1 reply
honeymamabee | @honeymamabee | Aug 10 12:29pm
In reply to @mahen "You're welcome. I hope you find some answers. I have AL Amyloidosis, there is another type..." + (show)
@mahen

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.

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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 .

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babesmom | @babesmom | Dec 6 6:52am

I had lab work for Amyloidosis and everything was good.
Does that mean I dont have it?
Going in for PYP scan next week

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Dec 16 9:12pm
In reply to @babesmom "I had lab work for Amyloidosis and everything was good. Does that mean I dont have..." + (show)
@babesmom

I had lab work for Amyloidosis and everything was good.
Does that mean I dont have it?
Going in for PYP scan next week

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

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1 reply
babesmom | @babesmom | Dec 17 7:02am
In reply to @colleenyoung "@babesmom, have you received the results of the scan? What led to your doctor wanted to..." + (show)
@colleenyoung

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

Jump to this post

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

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