? of Amyloidosis Again - Yikes
 

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! :eek:

sending it all to you kmeb...well wishes...good thoughts..prayers...

Attachment 663

Kmeb,

I'm sending positive wishes, vibes, thoughts, prayers and anything else I can think of all over so cal....i'm in the pasadena area and I am thinking of you. Take care and good luck.....

Ann

Hi Karen
 

Well, I sure hope you come out OK on this round of tests. I am glad to see you have a specialist w/Amyloid in your area who is looking after you. I will be thinking of you next week. Actually, I think of you often and wonder how things are going, but next week, I will think an EXTRA BUNCH... :) :) :)
Cathie

Good luck, hon--
 

--for a negative outcome (although I know you've wanted an explanation for years, I know you don't want this one.)

(I still suspect that in a sense, as you hinted, the fact that you've been hanging around this long means you don't have a true amyloid condition, but I'll keep my fingers crossed.)

Ditto from me....
 

I sure hope you DO NOT have this.

I hope it is ruled out! Crossing fingers/toes (as much as I can!)

Love,

Karen..good luck
 

I'm wishing all the good luck there is in the world right now. I need my jewelry making student back. Will look forward to hearing from you. I sure hope you get some answers and I will hope for the best.
Billye

I also, hope that..
 

the worst options are ruled out!

Maybe they then can get on to the other jobs requiring 'patch, patch, patch'!

-j

Hugs and fuzzies from me too. No jokes, no funny stuff. Just lots of love and warm wishes that you get the best care and a more uplifting diagnosis.

Take care,
Melody

Good luck Karen
 

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!
 

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
 

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 amyloid specialist in los angeles?
 

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.