[gardengirl]

When to test for amyloidosis?

by gardengirl on Sat Jul 05, 2014 7:13 pm

I have seen previous posts on amyloidosis (primary or concurrent with multiple myeloma) and am wondering if, when, and how that is tested?

If there's numbness and tingling in arms, hands, and the occasional toe, would that warrant testing?

Do any of the labs for multiple myeloma raise the question of amyloidosis or prompt the doctors to test for it?

Thank you!

[Dr. Ken Shain]

Re: When to test for amyloidosis?

by Dr. Ken Shain on Sun Jul 06, 2014 9:58 am

Amyloid deposition is a not always easy to identify and at times takes multiple attempts to diagnose -- even when clinically suspected. There are not specific lab values that demonstrate the presence of AL, but, depending on the organ affected, organ related lab abnormalities can be seen.

Amyloid is identified by tissue pathology. We look almost always in the bone marrow biopsies and request a fat pad biopsy if suspected. If there is no sign of amyloid in either the bone marrow or fat pad biopsy, and amyloidosis is still suspected, biopsies are carried out of specific organs: kidney, nerve, muscle, GI tract and even heart.

Each organ has its own presentation.

[pinball]

Re: When to test for amyloidosis?

by pinball on Wed Dec 10, 2014 3:03 pm

I have smoldering myeloma and will undergo a fat pad biopsy following:

• Increased mild proteinuria since April through present
• Moderate bilateral lower leg edema occurring over the past 3 months if standing for more than 10 - 15 minutes.
• Continued mild anemia (April through present)
• Selectively low IgM for the past 4 months
• Fatigue (more than 1 year)

BNP was also tested last week though results are not yet available .

With a relatively stable M spike of under 1,000 g/dL, I'm sure everything is fine and the FNAP is just a precaution.

[pinball]

Re: When to test for amyloidosis?

by pinball on Sun Dec 14, 2014 1:00 am

NT-proBNP came back as abnormal, with a result halfway between the normal max value for my age (normal should be a value of less than "51") and "100" the marker which may begin to indicate a serious issue.

Hopefully a BNP result in my range, though not normal, is not of any significance in relation to amyloid deposits.

I'm sure the fat pad biopsy to be performed in a couple of weeks will be negative - not looking forward to if after viewing the procedure online, but it doesn't look too bad and is much better than the alternative to rectum, kidney, heart and, after I read thru the processes so many brave folks on this site have been thru, it is easier to get thru a BMB or FPFNA.

*** - Mayo Clinic lab send out:

I'm not sure why my facility would send out the BNP test to the Mayo Clinic - anyone else have their BNP sent to the Mayo Clinic?

I've been traveling to a highly regarded cancer center which attracts patients form around the world and is normally ranked near the Mayo Clinic in cancer care. Strange that they would send out what seems to be a routine test to the Mayo Clinic?