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I know some one who has amyloid is in remission only 53. What is the father like
Is There Anyone Else Out There With Cardiac Amyloidosis ATTR Wild With Heart Failure?
Hope and pray for a cure. I think it may be just 4 years away if depleter drugs are approved by health authorities.
Need Info To Help My Attr Wt Husband Sufferin G From Malnutrition.
My husband is 89 yrs old , has severe spinal stenosis preventing him from moving much. He also has congestive heart failure and recently had his gall bladder removed which I am not sure has anything to do with amyloidosis. He has lost a tremendous amount of weight , lost a great deal of muscle and now suffers from malnutrition. Doc’s who basically no nothing much about amyloidosis have said forget the salt, liquid and fat restrictions and feed him anything he wants . He needs high calories. I… read more
I would imagine any kind of liquid nutrients. Prayers for your hubby 🙏❤️🙏
Wild Type Cardiac Amyloidosis..in ‘heart Failure’. Stiffening Left Ventricle. On Vyndamax. Are There Surgical Remedies For This.
Richard6.I do not think there are surgical remedies other than heart replacements at this time. Some Genetic reversals have happened in Europe-gene editing, but not hear yet.Jeffrey
Wild Type Nuclear Test
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
Has Anyone Been Told They Don’t Have Cardiac Amyloidosis When They Were Told They Did?
My HCM Dr tells me he doesn’t think I have amyloidosis. I take Tafadamis. Should I stop it? Don’t know what to do!
Second opinion! How were first diagnosed?
Can Anyone Tell Me How Long It Typically Takes To Get Genetic Testing Back?
Does This Disease Have Stages, Such As Cancer, 1 2,3,4?
There are stages that are used primarily for research purposes that grade the level of cardiac involvement (AHA) and another that categorizes your limitation in daily activities. There are also… read more
WHAT TYPE OF OPERATIONIS CORRECT FOR AMYLOIDOSIS PATIENTS TO GET FOR CARPAL TUNNEL RELEASE ?
I don't think the micro surgery is right it needs to be open surgery I think or it will grow back together again. 50% chance or better that it will not be successful in the long run if it is a micro surgery....Correct?
My husband is an 89 year old attr amyloidosis wt patient diagnosed about 5 years ago. Almost 2 years ago before having a Carpal Tunnel operation he tried umbilical cord stem cell injections. They… read more
How Long Before I Can Feel The Positive Effects Of Drinking Vyndamax.
Vyndamax comes in liquid form? I did not know that!
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