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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 have not officially been diagnosed yet. My doctor has tested me and is beginning to test me for the symptoms I have.

A MyAmyloidosisTeam Member asked a question 💭
Whitwell, TN

Over the last year I have had all of the symptoms for the CM and PN. My doctor has tested me for everything individually, but I saw the commercials about attr and I have every symptom. So I have a physical coming up on the 26th of March and I have already said I want to be tested for the protein. So I'm hoping I'm not to late to finding out. I'm only 47 and I'm scared to death of a positive result.

March 8
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Reactions
A MyAmyloidosisTeam Member

MelindaSims. Please educate yourself by searching in the Search Bar at the top right of this page. Type in ATTR or Amyloidosis Types or Treatment for Amyloidosis. You will be more educated than your Dr. and be able to drive the direction you want to go with following up with an Amyloidosis specialist. Most Drs do not know of this disease. Don't delay. Be informed, it will reduce your anxiety. Best wishes...

March 26
A MyAmyloidosisTeam Member

It sounds like you are being treated by someone that is not that familiar with the disease and will likely not be able to properly treat you even if you do get proper diagnosis.

You absolutely need to see a Specialty Clinic ASAP. The first steps will be to determine if and what type of Amyloidosis you may have.
It is a rare disease that often goes undiagnosed properly for years, due to the lack of knowledge of the disease and the presentation of symptoms common to other diagnoses.

I can't stress how urgent this is. The sooner it is properly diagnosed and proper treatment starts, the better your outcome and quality of life.

March 26
MyAmyloidosisTeam

Are you concerned about having ATTR amyloidosis based on your symptoms?

It's completely understandable to feel scared, but advocating for yourself and asking for specific testing is exactly the right approach. The fact that you're pursuing answers now is important.

Early diagnosis makes a significant difference with ATTR Show Full Answer

Are you concerned about having ATTR amyloidosis based on your symptoms?

It's completely understandable to feel scared, but advocating for yourself and asking for specific testing is exactly the right approach. The fact that you're pursuing answers now is important.

Early diagnosis makes a significant difference with ATTR amyloidosis. When caught early, treatment can start before serious organ damage occurs. New medications can stabilize or silence the TTR protein, helping slow or even stop disease progression. However, these treatments generally can't reverse damage that's already happened, which is why timing matters.

At 47, you're within the age range where hereditary ATTR can appear. Symptoms typically begin around age 30 or after 50, depending on the specific genetic variant involved.

What to discuss at your appointment:

- Your complete symptom history over the past year
- Any family history of amyloidosis, heart problems, or unexplained neurological issues
- Request specific testing for amyloid proteins (like a technetium pyrophosphate scan for cardiac involvement or biopsy)
- Ask about genetic testing if amyloid deposits are found

A MyAmyloidosisTeam member shared: "I come from a family of five siblings... Four of us are currently being treated for ATTR amyloidosis."

Remember, even if you do receive a diagnosis, starting treatment early gives you the best chance to protect your organs and quality of life.

March 8

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