Organ Specific Primary Amyloidosis Can You Explain This Condition? | MyAmyloidosisTeam

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Organ Specific Primary Amyloidosis Can You Explain This Condition?
A MyAmyloidosisTeam Member asked a question 💭
posted April 11
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A MyAmyloidosisTeam Member

I am suffering from primary Amyloidisis affected on kideny filtration so creatine increased to @8

posted April 21
A MyAmyloidosisTeam Member

Thank you for your comments and advice.
I was indeed tested via bone marrow and spinal tap.
That being said, I immediately countered with denial.
At that time I was deeply mired up in addiction of alcohol, opioids and street drugs.
I managed to survive that battle only by the grace of God.
I accepted Jesus into my life in 2015, was saved and baptized on February 17th of 2016.
I openly confess that when I was saved and baptized, I was still struggling with addiction issues.
Slowly but surely Christ's redemptive work had began.
By June of 2016 with the help of Jesus Christ I was clean across the board.
I was an easy target for Satan concerning addiction as I am a survivor of childhood sexual abuse.
While I still struggle with the long term affects of the childhood sexual abuse.
I am currently alcohol and drug free.
That is why I am so vague concerning my diagnosis.
I lived in a drug and alcohol fueled stupor of denial and deflection.
As you can imagine, PTSD and mental illness are incorporated into my person.
All that being stated, God is standing guard over me.
I am far from perfect and I am no saint by far but I pursue Jesus and His teachings with a sense of urgency.
By far the best decision I ever made in this short physical life, not to mention the eternal life I will share with my fellow Brothers and Sisters in heaven with the King of Kings.
For all the shame and pain that I have faced in this life our Creator and Father will set right in eternity.
Once again, thanks for your help and assistance.
God bless

posted April 21
A MyAmyloidosisTeam Member

Hi Dennis. I hope some of the group members with more knowledge and experience with amyloidosis will answer your question. My recent pancreatic tumor biopsy was positive for amyloid. My hematologist tried to tell me that I couldn't have amyloidosis because my light chains in my blood weren't high enough. I had to plead to get him to order a fat pad biopsy and bone marrow biopsy. I am still waiting to have those tests done . In the meantime my pancreatic cancer doctor explained that I meaned further test to check my digestive system, kidneys, liver, heart and eyes because I am experiencing symptoms in all of those organs. He also mentioned that although the hospital doctor and my hematologist are saying that they don't think I have amyloidosis, there is no denying that the pancreatic biopsy showed amyloid even if it is only in that one organ. I think that could refer to organ specific primary Amyloidosis but I won't be sure until I am evaluated at the Amyloidosis Treatment Center my cardiologist referred me to last week. I am hoping to get answers soon. Hoping you get answers to your question also.

posted April 20

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