ATTR-CM

Have you found and seen this:
https://www.heart.org/en/health-topics/cardiomyopathy/what-is-cardiomyopathy-in-adults/transthyretin-amyloid-cardiomyopathy-attr-cm
I have no background in this, sorry, but I would hope someone might chime in here before long.

Thank you so much for this link; it is way more than I had & will use this information when seeking treatment. Thanks again !

I saw the commercials on TV for this condition and got interested due to the combination of symptoms. I realize the drug companies advertise to sell their products and I tend to dismiss all medical advertising, but in this case I want to explore further.

If, and it is a big if, I have ATTR-CM, it is likely to be the “wild” version. I have life-long shortness of breath induced both by activity and inactivity. No pulmonologist has been able to explain my SOB. I was told 10 years ago after an EMG test for cervical surgery that I had carpal tunnel, but it never bothered me until a year or so ago. I was diagnosed with lumbar spinal stenosis 40 years ago. I was diagnosed with cervical spinal stenosis 10 years ago prior to ACDF surgery.

I am currently being treated for peripheral neuropathy, primarily in the right arm with right hand weakness (I drop things quite often), and tingling in the right hand and fingers with some pain radiating toward the right elbow, A new EMG confirmed the carpal tunnel again on both sides, but the neurologist thinks the problem is more likely to be a pinched nerve in the neck, possibly related to the ACDF surgery 10 years ago. I have been wearing a wrist brace for two months at the suggestion of the neurologist because she wants to see if it is carpal tunnel or peripheral neuropathy. Her theory is that the wrist brace for carpal tunnel will help only if it is carpal tunnel, with the alternative that it will not help if it is neuropathy. So far, it has not helped.

I’ve put off the annual cardiologist visit because I have not been having cardiac issues. I see the neurologist in about three weeks. I have enough medical issues at age 72 and I am not looking for new ones. I’m looking at this mostly because I have been searching for the causes of my shortness of breath for 50 years. The SOB, combined with the carpal tunnel and the spinal stenosis, constitute three of the six possible symptoms for the wild version of ATTR-CM.

I was diagnosed with attr wild type 4 months ago. Edema, afib increased. Carpal Tunnel, torn biceps, back pain lead the doctors to suspect this heart condition. Now on Amvuttra which has helped somewhat. Getting the second shot in 3 days. If you have the symptoms, have a cardiologist who is familiar with Amyloidsis give you the tests for this condition!

Thanks for sharing your story. This is all new to me. Every response helps!

I have had Afib & 3 of the other symptoms so I had an EKG, an Echogram & a PYP Scan but results were still inconclusive so I now will go to the Mayo in Rochester for 2 or 3 days of tests. I will try to give an update when there is one. Good Luck & thanks to all who have posted their experiences in the past. They are all helpful.
Phil in MN.