Hi, Ralph, I was diagnosed with amyloidosis wild type in June of 2022. Like you I had multiple Carpel tunnel surgeries which would have been the first indicator for me, had It been diagnosed. Worst yet I had a cardiologist who failed to make a connection even when my heart began to thicken, So I have no idea how long it's been going on, but obviously longer than the date of my diagnosis. Awareness is definitely a problem, but when I mentioned this to my hand surgeon he could care less. Because there is a lot more money in treating the symptoms than finding a cure. If you haven't already, I would suggest joining an amyloidosis support group. I wish you the best.
I was just diagnosed with amyloid cardiomyopathy because it's attacking my heart. I have too see a specialist at university of Michigan hospital for further evaluation for other organs with amyloidosis. I too was given vyndamax. Insurance didnt cover it, but grateful that Alliance rx was able to get some covered by insurance and the rest by the state. Otherwise it would be impossible to pay for. Cost here was $23,550.00. Hope your doing well. My journey with this has just begun.
Thank you for this detailed video! I have amyloidosis and started using Planet Ayurveda’s herbal supplements. They’ve helped me manage symptoms, and my cousin, who has a similar condition, has seen benefits too. Worth considering!
I have the same diagnosis but with different symptoms. I'm 4 years since my diagnosis and have the same meds as yourself. I hope it is delaying the end result but I don't know. When the end comes, it comes until then I will crack on...within my limitations.
Thanks for sharing your story Neil! There are many folks like Ralph and yourself battling this disease and sharing your stories helps everyone know they're not alone. If you want to talk to someone about your journey or have any questions you'd like to explore we're available for a call or email at +1 (617) 467-5170 or arc@arci.org
Hi, Ralph, I was
diagnosed with amyloidosis wild type in June of 2022. Like you I had multiple Carpel tunnel surgeries which would have been the first indicator for me, had It been diagnosed.
Worst yet I had a cardiologist who failed to make a connection even when my heart began to thicken, So I have no idea how long it's been going on, but obviously longer than the date of my diagnosis. Awareness is definitely a problem, but when I mentioned this to my hand surgeon he could care less. Because there is a lot more money in treating the symptoms than finding a cure. If you haven't already, I would suggest joining an amyloidosis support group. I wish you the best.
Sorry for your illness. Life has certainly taken us all in many directions.
I was just diagnosed with amyloid cardiomyopathy because it's attacking my heart. I have too see a specialist at university of Michigan hospital for further evaluation for other organs with amyloidosis. I too was given vyndamax. Insurance didnt cover it, but grateful that Alliance rx was able to get some covered by insurance and the rest by the state. Otherwise it would be impossible to pay for. Cost here was $23,550.00. Hope your doing well. My journey with this has just begun.
Thank you for this detailed video! I have amyloidosis and started using Planet Ayurveda’s herbal supplements. They’ve helped me manage symptoms, and my cousin, who has a similar condition, has seen benefits too. Worth considering!
I have the same diagnosis but with different symptoms. I'm 4 years since my diagnosis and have the same meds as yourself. I hope it is delaying the end result but I don't know. When the end comes, it comes until then I will crack on...within my limitations.
Thanks for sharing your story Neil! There are many folks like Ralph and yourself battling this disease and sharing your stories helps everyone know they're not alone. If you want to talk to someone about your journey or have any questions you'd like to explore we're available for a call or email at +1 (617) 467-5170 or arc@arci.org
What did you do when you were working? I used my hands and I’m happy to have found out that I have this situation and the drug Vindimax.
For the pain, could you use CBD pil,?