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That sounds very good, Ann. I hope your progress continues.
Hi. I had a numbness feeling in my left arm and hand for a few weeks about 6 months ago. It disappeared so I didn’t think too much about it. It’s back again now for a few weeks and I sometime get slights pins and needles in the tips of my fingers. Could this be a symptom of neuropathy? Could it be there for a few weeks, disappear and then come back again? I have hATTR cardiac Amyloidosis and am in Vyndaquel for 8 months now. Thank you.
calf and hamstring muscles severe pain when standing or trying to walk
after JUDY AMYLOIDOSIS
Does anyone that is on Vyndamax have the support of Pfizer's patient help plan for help in handling the costs of the medicine? I was approved by Medicare and Tricare but the co-pay is still outrageous and unattainable ($2860 for 30pill/30days.)
Thank you, Joel. I was approved by Pfizer's Patient Support Program and am now taking the Vyndamax.
Anybody having issues with numbness in the fingers I have non-hereditary cardiac AL
Thank you Nancy! I think I’ve had Cardiac ATTR for a while now even though it’s just being diagnosed. I had carpal tunnel surgery about 12 years ago and trigger on all my fingers and that may have… read more
I am suffering from primary Amyloidisis affected on kideny filtration so creatine increased to @8
The wound did not heal and a sample was sent to the Mayo Clinic. My confusion is that although blood tests indicate abnormalities with my kidneys and liver, my doctor is not pursuing any treatment for amyloidosis.
Confirmation of my AL Amyloidosis was made with a bone marrow biopsy. It makes sense to do that as the amyloid protein is made in the bone marrow. The doctor did it in my hospital room. The prep… read more
Has anyone had this test to determne what the amyloids are doing? Jeffrey
I had these tests as part of my initial diagnosis. It was both interesting to actually see the twinkling of the fibrils around my heart and appalling just the same. This proved, along with cardiac… read more
My husband who was diagnosed about a year ago, but who has had symptoms of CATTR for +12years has severe balance issues. Originally they were blamed on vestibular neuritis, but seem to worsen ever more frequently with "bouts" of imbalance and falls. Sometimes there is LOC, other times he is just soooo tired that he falls down. Drs seem to just shake their heads and seem to imply it is a separate issue
Has anyone else ever had inner ear nerve damage attributed to the amyloidosis?
I had a stroke in Cerebellum that I thought was cause of balance issues ( don’t know when), but I think it may be related. Had gotten worse lately. I have CM ATTR so it may have triggered the stroke.
My husband's PYP scan came back negative. Of course I'm thrilled but I can't believe we are not dealing with Amyloidosis. His symptoms mirror nearly all of the symptoms of this disease. In my research I've heard that a fat pad biopsy can provide a definitive diagnosis. Is that true?
Thank you for the advice. He has the fat pad biopsy scheduled for next week despite the specialist cardiologist poo-pooing the accuracy of the biopsy. In all of my research, I continue to see the fat… read more
