Positive test results for amyloids

Just got back a Positive Amyloid fat pad biopsy
Everyone I talked to prior to the biopsy said “it is so rare, we just want to rule it out”, so we never talked about what’s next and now my doctor is on vacation! I’m kinda freaking out and have no idea what the next step is or what to expect. All the report said was positive for amyloid - but did not say what type. Does that mean I have Amyloidosis?!?

I JUST got back a positive fat pad biopsy for amyloid. Prior to getting tested, I have been being treated with IVIG Privigin for polyneuropathy - I wonder if they will change that now.

How is it going?

Actually it’s not going too bad. The chemo is shots. I have completely 2 rounds/ am started my 3rd. The shots will be reduced to 1 shot then 2 every other week. Hoeing this will make the dizziness reside. But am pretty sure that’s from the hypertrophic cardiomyopathy. They said at OUMC that my heart is not strong enough for the stem cell transplant. I get to see a cardiologist that specializes in cardiac and amyloidosis, soon to see what he says he might want to do cardiac rehab. Has anyone done that with hypertrophic cardiomyopathy? Wondering ?
I guess I need a new pumper…. My light chain numbers have gone down from 90 to 60. I think it’s great. So does my oncologist.
If I can’t do the stem cell transplant, I will have to do the shots longer. ☹️

Good luck! We are all with you 💕

Where on earth does this amyloid stuff come from? Never heard of it. And now that’s all I hear about. Well. Is like your looking @ a particular car than you see it everywhere ?

Strange. I have looked at it and they had amyloids in 1856 I’m sure that the body was a cadaver. But still where does this come from? I’m leaning towards the Covid Vax. Oh yes I do conspiracy theories( sorry) 😣. But hey that’s my opinion, everyone has them. LOL I won’t judge. 😶.
Just wanting my somewhat normal life back! Yall thank you for listening to me ramble.
Any suggestions or ideas. I’m ready! Have a great weekend!

I got back a fat pad biopsy result positive for amyloid. My doctor is sending it to Mayo in Rochester, Mn for a second opinion. Does anyone know how long it will take to come back? Waiting is not so easy- when you have a positive result already. Especially when it seems starting treatment quickly is important.

@lmoser23, how are you doing? Have you heard back regarding the second opinion evaluation?

Mayo Clinic in Rochester, Mn is the Best…. My kidney biopsy was sent there & I had my stem cell transplant was there 17 Yrs ago & I’m still here!!! First will do more testing & then you are put in a slot…. At the time it’s hard to wait, but it’s like clockwork….. Prayers..