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Real members of MyAmyloidosisTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

I hear it could Help neurologically as well as help dissipate diabetic neuropathy, I have peripheral. Numbers are consistently low so my primary says I no longer have diabetes at all and I've lived that way for the last 6-7 years. No issues.

September 16, 2025
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A MyAmyloidosisTeam Member

From a nutritional standpoint it might be a good addition to your prescribed medication. They still don't know much about the biologicals of the proteins which are amino acids and which ones get twisted. They had a good talk yesterday see if you can get the transcript from it from Sami Khell Pennsylvania University.

September 18, 2025
A MyAmyloidosisTeam Member

Not specifically Beverly ๐Ÿ˜”. The main specialist hospital organizations are Mayo Clinic in Minneapolis and Cleveland Institute I believe it's called where all the major "specialists" hospitals and researchers are I hear.

Have you tried the new drug Attruby yet? It's supposed to be a improvement over Vyndamax Tafamafis.
A New treatment called ALXN 2220 by Nexigan CRISPR is potentially on the market as a trial or long-term cure!!!!! ๐Ÿ˜ค๐Ÿ˜ฎโ€๐Ÿ’จ Hopefully we're All be around and mobile if that comes to fruition, probably years away from being FDA approved.

I'm on Wainua, actually advertised below, home self-injections every 30 days for Polyneuropathy.

Be safe, strong and resilient ๐Ÿ™ โค๏ธ.

GStrong

September 24, 2025
A MyAmyloidosisTeam Member

Hi Greg! Do you have any suggestions for finding a new cardiologist in the STL area?

September 24, 2025
A MyAmyloidosisTeam Member

Much Appreciated Glenna!!! ๐Ÿ™‚

September 18, 2025
MyAmyloidosisTeam

Vyndamax (tafamidis) works specifically by stabilizing TTR proteins and preventing them from clumping together in amyloidosis. It's FDA-approved specifically for treating amyloidosis-related heart disease and heart failure.

While Acetyl L-Carnitine may have some general health benefits, there's no evidence it works the Show Full Answer

Vyndamax (tafamidis) works specifically by stabilizing TTR proteins and preventing them from clumping together in amyloidosis. It's FDA-approved specifically for treating amyloidosis-related heart disease and heart failure.

While Acetyl L-Carnitine may have some general health benefits, there's no evidence it works the same way as Vyndamax in breaking down or preventing amyloid protein clumps. The mechanisms of action are quite different. For managing amyloidosis, it's important to stick with proven treatments prescribed by your healthcare team. TTR stabilizers like Vyndamax are specifically designed and tested for treating amyloidosis. Always consult with your doctor before starting any new supplements, as they may interact with your current medications.

September 16, 2025

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