I saw the amyloid spiecialist today (the ONLY one in So. Calif.) - he's done bloodwork and a special cardiac test to look for amyloid desposits in my heart..... his take is "although the heart test did not show deposits (I've developed cardio-myopathy in the last couple of years) he cannot rule it out. He said my symtoms are way too severe to be attributed to only PN, or Gastroparesis (autonomic PN) and next step to biopsy every organ they can to try to find if it is the culprit (amyloid can be very difficult to find)...

I'm hoping to be able to work with my GP at a local hospital who is an excellent doc and will work in conjection with him to try to rule this disease out - but again, he says based on symtoms alone hes sure its there some where..... So I march on -

Next week hope to finish dental work from the damage I did falling on my head out of the shower few months back - then work with GP to see what they can find........

Still in limbo

Is amyloidosis the only thing they're looking at now? What about all of the various autoimune conditions? Have they been ruled out?

I'm so sorry you're going through all this, and salute your courage and fortitude.

K,
I've been waiting all day to hear what you found out. I sure was hoping it was conclusive and was good news. You have so much spirit and I know what you are going thru. Wish I was there to help you thru it all. Best I can do is a hug.

Billye

Wings - I've had all the testing on the Liza Jane Spreadsheets - no evident auto-immune markers there at all...... (including all the anti-nuronal anit-b's, inherited, etc. etc.) - had a positive amyloid biopsy 3 years ago but when I tried to have it confirmed by "experts" (there were none out here at the time - had biopsy sent to Boston) - Boston didnt feel comfortable confirming because they didnt have any unstained tissue to test and the second one negative...however, now we have our own "expert" in So. Cal. thank goodness - he treats almost exclusively Multiple Mylenoma and amyloid patients (they are experienting with similar treatments for both - high dose chemo - analogous stem cell transplant - etc. very radical stuff).... so I finally have a doc that sees this frequently... he says I fit right in with the pack.... I hope not....

Silverlady - consider myself hugged

a doc who didn't claim that you were 'imagining' things!

Yikes anyhow to finding out that your instincts were right, Boo to the fact that your instincts were right.

Knowing what you're dealing with, at least, will maybe give you a handle of what to do next? Asides from more tests, that is?

Heaps of hugs in the meantime tho - j

I'm glad you've finally found a doctor you can call home, although I do wish it weren't amyloid. You know that.