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.

Question--have they been looking exclusively for the amyloid protein classes associated with blood cancers--acquired amyloidosis--or also for the familial hereditary ones (transthyretin)?

and acts like a duck, well, the doc thinks its a duck..... we'll see...

Glenntaj - amyloid is usualy treated by onococlosts because its a close family in that it deposits proteins in organs, (or whereever it pleases) that eventally destroy the organs (and someitmes presents with multiple mylenoma)... There are different types of amyloid and the end results can look very much the same from each type (organ failure, neruopathy, autonomic problems, etc.) however, its important to determine the type of amyloid because any treatment is determined by the form of the disease (main types Primary, Secondary, Heriditary)... thats why its important for the docs to have a sample of the disease - and they go from there with further testing to see what type of treatment, if any, should or could be used..... so short answer long - no - they see the end symtoms and are looking at all types.......

similarities between the 'categories; of Amyloid and various neuropathies and auto-immune disease categories....No wonder docs have such a hard time deciding if we have a problem they can address, let alone any problem at all since so much can be WAAY out of their C.O.G.!

Soo, can I ask, HOW many different docs of which different types have you seen to date? Then, I guess, how many MORE will you have to see? If I recall correctly, you are probably one of very few besides LizaJane and Billye to almost completely or beyond completely completed all the blanks in LJ's charts? Does that mean you've been 'creating' new 'boxes'?

Down right scary on one hand, great that docs are 'on the scent' on the other?

Hoping, I guess is the best way to spend effort for now.. Save a portion of your strength for that!

Heaps and heaps of HUGS! - j

Thank goodness for the lizajane spreadsheets and medical history - this doctor was blown away when he saw them - thanked me - and did testing based on them...... I've seen so many docs i couldnt even begin to count and so many were completely useless visits...... since i got sick 7 years ago i've had to move out of place with stairs, etc... 3 moves - so geographic changes of hosptals etc... then... MOST docs dont seem to want a complicated patient and either told me up front or just wasted my time and humored me for a while - then admitted they didnt have a cllue what to do...

Thanks to the spreadsheets i finally got a number of the tests done only 3 years ago, long after I was disabled from PN - but that doctor also decided since he didnt know what to do (and this is a person who advertises himself as a pn expert) - finally just said - nothing else i can do..... go home - you should just move into a nursing home... thanks for nothing - i just turned 50 - no way.....

Those charts have been trully invaluable - and I have learned to keep updated all the time, as well as my current medical history - I have never had a doctor not thank me for them!

As far as going down any roads - I'd take a different one right now if I could!