Does Anyone Else Have Wild Type Amyloidosis With No Cardiac Involvement? They Say That I Am A Rare Case By Having No Cardiac Involvement. | MyAmyloidosisTe

Connect with others who understand.

sign up Log in
Resources
About MyAmyloidosisTeam
Powered By
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.
Does Anyone Else Have Wild Type Amyloidosis With No Cardiac Involvement? They Say That I Am A Rare Case By Having No Cardiac Involvement.
A MyAmyloidosisTeam Member asked a question 💭

I was diagnosed last year by both the Mayo Clinic and Boston University with the Wild Type. Cardiac biopsy showed no involvement. I do have carpal tunnel, and severe neuropathy.

posted January 23
•
View reactions
Stages of Amyloidosis Read Article...
A MyAmyloidosisTeam Member

I am starting to appear to be going in this same direction because the cardiac MRI shows no cardic involvement but appears to be wild type ATTR. However, my lambda light chain was ever so slightly elevated and because the wild type ATTR without cardiac involvement is so rare, then there must be another answer so now I am going back for a pet scan and bone marrow looking for multiple myeloma because a significant percentage of Multiple Myeloma patients have amyloidosis even though that would surprise my doctors because I do not have a monoclonal protein identified. I also have the bilateral carpal tunnel, spinal stenosis, severe polyneuropathy, significant balance issues and shortness of breath. I have not had the cardiac biopsy yet so I would not be surprised if that is in my future because my doctors do not believe that I don't have cardiac involvement.

posted January 23
A MyAmyloidosisTeam Member

I have wtattr also -tests show no heart involvement yet-had cps on both wrists-I take gabapentin and it works well for neuropathy.Ifound out about the amy. at that time.January 2023 3 months later had the test showing no heart involvement ---Joe

https://time.January
posted January 24

Related content

View All
Does Anyone Else Have Balance Issues?
A MyAmyloidosisTeam Member asked a question 💭
I Am Wondering If I Should Continue To Take Tafamidis As I Am In Stage Iiib Advanced Heart Failure?
A MyAmyloidosisTeam Member asked a question 💭
Questions For Cardiologist At First Consult?
A MyAmyloidosisTeam Member asked a question 💭
Continue with Facebook
Continue with Google
Lock Icon Your privacy is our priority. By continuing, you accept our Terms of use, and our Health Data and Privacy policies.
Already a Member? Log in