Does Anyone Else Have Wild Type Amyloidosis With No Cardiac Involvement? They Say That I Am A Rare Case By Having No Cardiac Involvement.
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.
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.
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
Does Anyone Else Have Balance Issues?
I Am Wondering If I Should Continue To Take Tafamidis As I Am In Stage Iiib Advanced Heart Failure?
ATTRwt : Has Anyone Verified Hearth Thickness After Using Tafamidis By Echocardiogram Versus The Thickness Before The Therapy?