Mayo Clinic - Amyloidosis - Finally a Diagnosis

Many of you diagnosed with Amyloidosis went through a similar experience with diagnosis... or should I say mis-diagnosis. It's mentally draining to keep going to specialists and still not coming up with answers... as many of you know, you just feel like quitting.
After two years of searching both in Las Vegas and at Keck Medical at USC, we finally went to Mayo in Rochester. Many days of testing and they found the answer. Even though the diagnosis was serious, we were excited because we had something to shoot for. It was just the start of the journey.

[@juliemcmaster3770]

60/40 doesn't seem like good odds when talking about your life. Luckily no one told me that either when I was diagnosed. Stats like that would not have been helpful. One day at a time. And glad for the next one.

[@DanLier]

Yes, hearing those types of numbers doesn't help.

[@powerofloveism]

Blessings, I was wondering could you please specify exactly what tests you had to determine your diagnosis? Was it picked up during a Ct Scan or the Heart Muscle? or was it limited to blood work or biopsy of bone marrow , heart tissue biopsy ? or thigh tissue biopsy? MRI or Pet Scan? Please specify for me ? thank you and God Bless you.

[@DanLier]

Fat aspirate test and bone marrow biopsy. First indication was blood test... I had high light-chain protein count... then came 2-years of BS until they finally gave me a fat aspirate and bone marrow biopsy at mayo clinic

[@beatlejuice42]

Do u qualify for a stem cell transplant ? U am considering it

[@amyloidosismyjourneytosucc4995]

Don't need one at this point. My LCP are just above normal. I was too weak when I was first diagnosed or they would have done it.