Hi Joe!
Here go the questions.
Do you have carpel tunnel in one hand, or both?

Did your echo show any thickening of the left side of your heart?

It sounds like a fat biopsy. Know that they are not full proof. Mine was negative, as are a lot of people. I was diagnosed with a small growth in my finger. It was sent to Mayo Clinic for typing, came back AL.

Did they do any biopsies with your endoscope? You can't necessarily seen amyloid, that is why to have random biopsies done.

One thing that is so important, is to find a hematologist that specializes in amyloidosis. Unfortunately, I could only find them at UCLA, and Mayo clinic in Arizona, is the nearest to you.

But sounds like your PCP is up on things. That is great! Ask your PCP if he would like pamphlets on it. I am one of the founders of SAAG, Sacramento area Amyloidosis group. We also have a cardiologist, who specializes in amyloid. He is also one of the founders. We bring education and awareness to medical professionals, and intern hope for earlier diagnosis and treatment. We will be having a meeting at the end of April, if your PCP is interested.
I am also the Sacramento, and surrounding counties, support group facilitator.

I hoped some of this helped.

answers/comments
1) no confirmed diagnosis at this time
2) yes PCP only however very recent visits with cardiologist gasterenterologist
3) suspicions arose with elevated calcium levels
4) follow-up with light chain tests which showed kappa at 24 lambda normal and ratio at 1.71
5) plus tongue irregularities left leg swelling (but no edema) carpel tunnel in am & nueropathy
6) PCP ordered biopsy of abdomin
7) just before having biopsy retest of light chains showed notable improvement kappa down from 24 to 22 and ratio well in normal range at 1.48
8) plus tongue returned to normal size with less serration (but still present)
9) PCP cancelled biopsy because a) at those levels would not treat b) if treated goal would be normal ratio which is where I am now c) so retest in 3 months (February )
10) additionally by biopsy now results might not fully recognize type which impacts treatment
11) last week had endoscopic procedure and no amyloids seen in stomach
12) 2 weeks ago echo showed 65% ejection fraction BUT some dilation of 3.9
13) PCP remains very suspicious (as do I) but wants to be confident of diagnosis before moving forward because of strong side effects of the treatment. Gastroenterologists concurs on this strategy
14) so by end of February should have diagnosis confirmed will move forward with treatment
15) no weight loss, no shortness of breath but numbness/tingling present
16) some skin disturbances, with dermatologist scheduled for end of month
17) normal ratio and dropping kappa and improvement in tongue reasons for 3 month retest strategy

Happy to answer your questions as I am on this site to Learn. I suspect that I will get a confirmed Positive diagnosis of AL. and want to get as much info and advice going forward.
Thanks for you interest
Joe

Hi Joe,
You should also have the following blood tests to check your heart function:
NTproBNP and Troponin T and I. The "impaired relaxation" on your echo results caught my eye. Amyloid stiffens the heart muscle and keeps it from relaxing as it should. Because the heart cannot relax completely, some blood tends to remain in the heart chamber which can then cause congestive heart failure. This could be an early indicator of amyloid infiltration.

To view a list of amyloid centers, please go to www.amyloidosissupport.org and click on the drop-down menu below the map. Select a state and you will see the list of amyloid centers. There are several in California, one in Utah and Mayo in Arizona.

I would also push to have the gastro biopsies stained with congo red. Since you already have tissue that has been taken, it would be easy to test. I would also request for the biopsies to be sent to Mayo for that testing. It needs to be done by a lab that is experienced with performing the congo red staining, otherwise, you could end up with under stained or over stained slides that would give false results.

Here is answers to SOME of your questions
1). no fat pad ( never heard that term before)
2) the polys biopsies were NOT tested for amyloid
3) biopsies were taken from EGD but also NOT tested for amyloid

the rest of your question I cannot answer until I visit my PCP in 2 weeks when followup happens after upcoming tests
Remember I am not confirmed. I am in the 'SUSPICOUS" phase.
I have taken note of those "other tests" that you mention and will discuss with PCP
Please forward to me any other tests or actions that you recommend.

fyi, In the next 30 days I have appointments with PCP, Cardiologist, Kidney doctor & Dermatologist. I have not have had any discussions on Amyloidosis with any of them except the PCP. So any suggestions that you have regarding those visits with those individual Specialists would be appreciated

Do you have any comments on any of those ECHO results that I previously sent to you.?

Will advise more after my upcoming visits
Totally symptomless at this time

thanks
Joe