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What Medical Facility Has A Team Approach To Amyloidosis Including All The Complications, Neurology, Balance, Gastro, Carpal Tunnel, Etc.
I was diagnosed with Wild type from exposure to Agent Orange in Vietnam 67-68. I have been on Vyndamax for 18 months with stable results. However, my very capable Heart physician is a heart team only. I was referred to a neurology group but appointment availability is mid March!! Hence the search for a comprehensive team approach.
You need an electrophysiologist and a cardiologist that specializes in amyloidosis management. I only consulted a neurologist more than 2 years after my wtATTR diagnosis. Neurological issues are generally the least problematic for wild type amyloidosis patients.
Heart involvement with arythmias are much more concerning for most people with wtATTR-CM. However, not all people with wild type amyloidosis have measurable amyloids in their hearts....or they may just have incompetent doctors who can't or don't correctly test for heart involvement.
Neurological problems are a much more prevalent issue for hereditary amyloidosis.
😔
Amazing KU docs diagnosed my ATTR
but they are not a comprehensive team
if you have many of the disease complication
it is difficult to get appointments. Thanks Steve
https://www.kucancercenter.org/contact-us
The university of Kansas cancer center
Even if they can’t help you I think they’ll be able to point you in the right direction. Good luck!
Kansas city 66224
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