Diagnosed, how to slow progress?
I was diagnosed after carpal tunnel surgery last January. I have wild type, went through heart test, lung scans, blood tests. As of a year ago tests my heart and lungs are okay. I have a follow up appointment with the cardiologist soon. What can be done, if anything, to slow down the progress of this disease?
What questions should I ask? Thank you.
May I ask how you were diagnosed. Which specialist is best to see. I understand one has to have biopsies and special stains to confirm the presence of amyloid tissue. Is there a blood test that is simpler? Thank you.
2006 was the year I was told I have cardiomyopathy, while going for a pre op for carpal tunnel surgery. was told to continue life as I had been doing 10 years later I had shortness of breath and had a defib and pacemaker installed. Fast forward another 9 years and 2 "cardiologists later I still had shortness of breath and was not updated that I had ATTRCM. I was told the shortness of breath was COPD. This past year I went to another cardiologist at MCSC in Charleston SC. The dr there said I had water around my heart as well as the first told that I have ATTRCM. She put me on a diuretic( lost 15 lbs) and tafamidis. No shortness of breath, no COPD. If you are not happy with your treatment DO NOT STOP LOOKING for a dr. and treatment that helps you.
, thank you for sharing that! It is easy, esecially when not much is known about a condition, to take the word of those you consider professional. We should always follow our gut. - Warmly, Donna (Team Member)
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.
