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That sounds very good, Ann. I hope your progress continues.
I have had surgery in the past, and it does work wonders. Mine is mostly in the joints of the hands, getting worse. Some days hard to open and door or a door handle.
mine too
needing to use assistive devices to walk
General Feedback for improvement in Medical Management by Hospitals for the Patients of AL Amyloidosis and Cardiac one in Particular: ( Draft as on 30/08/2023)
In order to address the issues and concerns regarding the management of Cardiac AL Amyloidosis, it is important to initiate a debriefing session with the medical team involved in the patient's care. Even the explanations offered on the pathways of treatment as Immunotherapy + Chemotherapy as against BMT are vague ,unclear, and scary with… read more
Mr. Joel - I am following your advices that are very meaningful. I was looking for AL Amyloidosis, Cardiac Specialist ,who may contact through Teleconsultancy
I was curious to get the Q & A Bank… read more
I was diagnosed 5 weeks ago and am still waiting for the Mayo clinic to type the biopsy. It's scary not knowing what type I have and waiting to find out what treatment plan the doctor is going to put me on.
I said the same thing after my first trip to BU!
You’ll get good exercise tips on here. It all depends on what your doctors say and your tolerance level. Walking is pretty good for me and sometimes dancing 😊
He has Al Amyloidosis diagnosed August 2023, just finishing last month of Dara cyborD
I do have taste issues. Almost all foods taste salty to me. My tongue is also enlarged and I have bitten it so many times I have continued red marks in that area. I hope things improve for your… read more
In June '23 my ECHO showed LVEF of 65%; this morning's ECHO estimated 43%. Probably not a good trend but I am on Tafamidis now. I suppose I should get busy with regular exercise and lose some weight. Agreed?
Also my doctor lets me do a full gym workout scaled back about 25%. I feel like I’ve joined the human race again!!
I take Jardiance and Vyndamax. My cardiologist says it might help ejection fraction.
Call you cardiologist and get him to help you with the application for meds.
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