Diagnosed, how to slow progress?

Hi , some really great information here from and (Thank you, ladies!!) I hope this helps with questions for your doctor, and as you can see - you're never alone! - Warmly, Donna (Team Member)

Welcome to a club none of us ever wanted to join. I’m truly sorry you’re here—but please know you’re not alone. This community exists to support one another, to share, listen, and walk this road together, so don’t hesitate to lean on it.

One important thing to remember is that this disease looks different in everyone. No two journeys are exactly the same, so try not to compare your path too closely to someone else’s.

A few questions you may want to ask your care team include:
• What treatment options are available to me, and when should they begin?
• What has changed since my last round of testing?
• What can I be doing right now to take care of myself?
• What symptoms or changes should I be paying attention to?

I’m always happy to be your cheerleader and support you in any way I can. Please feel free to reach out and connect with me anytime.

This is a wonderful site with so much helpful information—you’re in a good place.

Hi!
I don’t want to assume, but one of the first things I’d recommend is confirming that your care is being guided by an amyloidosis-experienced specialist or center or program, since there can be some variation in how people are followed, especially early on.

Based on what you shared, being diagnosed after carpal tunnel surgery, having wild-type ATTR, and reassuring heart and lung testing so far, these are the questions I’d personally bring to my cardiology follow-up:

• Do my current tests still show no heart or lung involvement, including anything subtle or early?
• What tests are you using to monitor this, and how often will they be repeated over time?
• What would prompt a change in the plan going forward?
• What are my treatment options at this stage, and how does that align with the current standard of care?

Having clarity around testing, follow-up, and treatment expectations can help reduce a lot of uncertainty.

Happy to connect further. My contact information is in my profile if helpful!

Hi , welcome, we're glad you're here! I found an article which I hope my be helpful:
https://my.clevelandclinic.org/health/diseases/17855-amyloidosis-attr
And I'm going to tage our contributor who may be able to help you with the questions for your doctor, and

Please keep in touch and let us know how you're doing. - Warmly, Donna (Team Member)