I wish you the very best and am wishing for a negative outcome!!
Will be thinking about you, and please keep your chin up.

Thanks everyone for all the good wishes all! (Silverlady - I plan on being a jewelry student for a long time and nagging you :-)........

I found out the tests I'm scheduled for Monday - the heart scan is called a Technetium Pyrophosphate Scan - nuclear - usually done after or to detect a heart attack but looks for damage in the heart, the dye attaches itselt to calcium deposits in the heart - they will make me radio-active - then I go down to the cancer center for the classic amyloid blood tests (Free Light Chain Assay, Serum Imm., BMP (I think this is a heart measures test actually), etc., then after 3 hours of radiating go back to nuclear medicine for the scan - which takes about half an hour.... apparently the dye also attaches to amyloid deposits... which is a much better alternative then having a piece of your heart cut out......

If amyloid tests negative - they will continue to try to determine cause of cardio-myopathy (which is important in any case) (can autonomic neruopathy give you cardio-myopathy?) - I havent had a chance to talk to the cardiologist but I hope that test will show other conditions as well.

Its gonna be a long weekend!!!!!!! but I'm hanging!

Karen,

We will all be waiting to hear the hoped-for good news about your tests! I imagine it will be helpful to get a more definitive picture of your condition, after all these years of uncertainty.

You have been hanging tough and I am sure you will continue to do so. But it would be nice if you could put the amyloid business behind you and go on from there. After all, it is not as if you will have nothing serious to deal with . . . so, you are due at least this break.

I will be holding a good thought until (oh - and after too!) we hear the results.

rafi

Hi Karen,

I'll be keeping you in my thoughts and prayers that this isn't amyloidosis. Take care and give your cats an extra pat from me.

Love Lynn

who is the amyloid specialist in los Angeles?

Sadly, Karen has passed away and
can not reply to newer posters here.

Perhaps someone else will be able to.