Wish me luck folks....

I had a very rapid onset of severe sensory/autonomic neropathy that put me in wheelchair when first sick within two years (started 7 years ago).... went thru the LizaJane spreadhseets with my docs - and they did tons of tests, bipsies.... one that came back positive was for amyloidosis (very bad thing to have) and the second one negative..... I had the test repeated and athough they couldnt rule out - have assumed since I was first told I had "maybe a year" - which was 3 years ago, that all was ok....

I had surgery a year ago December, and the docs could see I was developing cardio-myopathy - and had to have more surgery just two months ago after a fall that showed the heart disease had progressed over the past 10 months... and felt that it looked like cardiac amyloid (I've had 3 cardiologists tell me now that my echos show amyloid type damage).....

Anwway, we finally have an "amyloid" specialist here in Los Angeles - he is an oncologist that specilizes in Amyloid (even though its not a cancer - its less treatable - its the closest cousin) and Multple Mylenoma.... And, at the same hospital (again, the only one in Los Angeles, they have a non-invasive cardiac test with some type of med and and echo that can show the disease - previously they had to do an invasive biopsy into your heart).....

I saw the Amyloid speciliast before Chirstmas armed with my LizaJane spreadseets - the doctor has spent a great dea of time going over my tests (thank you LizaJane) - and reviewed them also with the cardiologist.... They are concerned enough that I'm sheuduled for a day of tests next Monday - then go back to meet with the amyloid specialist again.....

(amyloid would competely explain the PN, gastropareisis, cardiomyopathy, orthostatic hyoptensoin, etc..)

Anyway, wish me luck... All other treatments are on hold until this is done - and its rather stressful since its always until the last maybe 15 years considered fatal - and treatment, depending on type - is brutal... but at least I should be able to rule in or out for sure.....

No stress here!