Amyloidosis: What kind of specialist to see for a second opinion?

Posted by sseats @sseats, May 4 8:44am

My best friend was recently diagnosed with Amyloidosis and would like to get a second opinion. What kind of specialist should she look for?

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Welcome to Connect @sseats. Since Amyloidosis can affect multiple areas/organs in the body getting the right specialist for your friend will be determined by the area of involvement. Do you know which type of Amyloidosis your friend has such as cardiac, pulmonary, liver, etc..?
We have several discussions in the forum with members who have Amyloidosis of specific areas who could offer some support to your friend once we know which type they have.

Here’s a little informative article about amyloidosis that might be helpful: https://www.mayoclinic.org/diseases-conditions/amyloidosis/symptoms-causes/syc-20353178

If Mayo Clinic is a possible consideration for your friend here is a link they can use to get the process started to request an appointment. http://mayocl.in/1mtmR63

Who has your friend seen so far for the initial diagnosis?

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Columbia-Pres in NYC and Boston Mass. are two
Amyloidosis centers in the NE

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I was quite healthy until I suddenly started getting short of breath when I exercised 12 years ago… But my Amyloidosis was not diagnosed for almost 8 years! I’m glad your friend has had a proper diagnosis. Mine was diagnosed by an alert kidney doc who noted changes in my blood chemistry and ordered a kidney biopsy. I believe it was confirmed with a bone marrow biopsy as well.
I was also diagnosed with multiple myeloma, a blood cancer in the bone marrow that can accompany Amyloidosis . I was treated with four combinations of chemotherapy from 2019-2021 at Dana-Farber Cancer Institute in Boston, until the correct combination for my body was found to put me back in the normal range.
After a period of remission, my markers began to rise again last fall, and I was advised to begin a new immunotherapy, Elranatamab, which binds cancer or amyloid cell to my T cells (part of the immune system) so my own immune system can take care of the issues. Much better/less toxic for the body than chemo! (Although not without severe side effects for the first two “step up“ doses, as the body is getting used to the new demand on the immune system: I was hospitalized for a week to deal with very unpleasant side effects!) In some ways, it has been worth it, because my cancer markers immediately dropped to the normal range after those first two doses and I was switched to every other week injections… BUT (for those of you not interested in alternative methods of healing, the following may be way too much detail) I got new information last week from a new and fabulous cardiologist indicating that my last echocardiogram indicated my body has been able to rid itself of all the buildup in my heart, an unusual outcome after a round of treatment. (Usually the buildup stops and sometimes partially reverses itself over time, but not fully.) My new SoS free diet - Salt, oil and sugar-free - and new exercise regimen stopped my numbers from rising over two months but had not yet turned them around. Since I know alternative methods are slow, I was concerned in March that the Amyloidosis was building up in my heart every day and didn’t feel I had time to lose - so I started the immunotherapy right away, and then will focus solely on alternative methods to stay in remission …But had I known that my heart is so good at taking care of things, I might have decided to wait. Oh, well.
Best of luck to your friend with finding good specialists for their particular conditions and just the right treatments to restore them to vibrant health!💪🥰

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