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Is There A List Of Tests That I Can Discuss With PCP Who Suspects Amyloidosis?

A MyAmyloidosisTeam Member asked a question 💭
Las Vegas, NV

Most frequent symptom is Carpel Tunnel and almost constant pins & needles sensation and overall "blah" feeling accompanied with lethargy. Understand that these are general symptoms related to other diseases but since previous out of range Kappa Light chains and Ratio where present on first testing and remaining Kappa mildly out of range while Ratio normal in 2nd round of testing suspicion of PCP remains Amyloidosis. Just a list of test would be helpful in the meeting next week with PCP

February 18, 2023
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A MyAmyloidosisTeam Member

That is very interesting Paul. Thanks

March 24, 2023
A MyAmyloidosisTeam Member

Biopsy is the surest test

February 25, 2023
A MyAmyloidosisTeam Member

BASIC TESTS (for Cardiac Amyloidosis) INCLUDE: Echo cardiogram, functional Cardiac MRI, Technetium 99 scan (for wild type), basic labs (chem profile, CBC, UA), blood tests for Hereditary DNA and for light chains. These will give an indication of which tests to continue with and probable treatments.

March 21, 2023
A MyAmyloidosisTeam Member

Joe, my early symptom was unexpected fatigue. With hindsight I saw my VO2Max drop at the same time as I encountered unexpected fatigue while cycling up a hill that I had ridden before perhaps 100 times. With no other symptoms, a year and a half later I finally convinced my PCP of my problem by presenting graphs and charts measuring my recent activities. From last Sept on I started accumulating fluid on my lungs, eventually leaving me short of breath--since have had lungs drained. So fluid and fatigue were/are my only symptoms. I am headed to 9th weekly treatment for my AL amyloidosis. Guess we are all different! Good luck to you. vern

March 18, 2023
A MyAmyloidosisTeam Member

very recent testing showed "no longer" any Light Chain & ratio irregularites, Calcium now in normal range (this is what started suspicion) no longer any tongue enlargement no monoclonal protein in blood, normal toponin, "no longer" albumin in blood or urine. protein electrophosis all "now" normal range. Bottom line PCP says cannot now justify abdominal biopsy. However he suggest Dermatologist look at skin issues and do biopsy if it is warranted. Thus not timely to treat as these levels of various markers would be goal of treatment. Will retest all in 6 months. Wrist Carpel tunnel symptoms is getting relief through brace while sleeping and all around lousy feeling improved by modifying Medication regime and timing. So while still anxious I have to agree with PCP to wait, watch & repeat. He says 6 months I want 3 months. I agree on biopsy but also see rationale for waiting based on the recent reduction and elimination of active markers "without" treatment. In the meantime he ordered Neurological evaluation as symptoms of tingling & numbness, doubtful, be related to RA, MS, Parkinsons, or other Central Nervous trauma related to severe auto accident decades ago. While I remain "susPicious" I think that PCP IS providing good care. Thanks for your response Don. my best to you.

February 25, 2023

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