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What’s Your Trick For Enjoying Holiday Treats And Staying On Track? 🎃
I have so many other or additional complications that I have lost over 51 pounds since last January.. I have no appetite most of the time,but I try to eat a nutri grain bar ,a small container of… read more
Amyloidosis What Type Of Amyloidosis Do Yo Have And Are You Aking A Diuretics? Thanks, Steve
I am Asking for an informal survey of what type of amyloidosis do you have and are you taking a diuretic. We noticed on this site that there are a lot of diuretic users and I tried my wife's diuretic for a week with an improved urinary flow. However, my heart group took me to the woodshed and urged me not to be experimenting with diuretics. Hence I would appreciate any input you might have especially for wild type ATTR combined with diuretic use.
I have Al Amyloidosis, and I’m currently in the hospital right now having fluid removed but usually I’m on Torsemide 100mg which I take twice a day but last chemo medication made me swell again.
Does Anyone Swell After Exercising Or Physical Activity?? Seems Like While On Treatment I Swell More After I Exercise And Was Wondering.
Or maybe try compression socks
Anyone With Al Ambloidosis Have Problems With Fluid In Lungs?
Hi Kim. I’ve got wATTR. My Amyloidosis Team tells me that fluid in my lungs indicates another manifestation of amyloid attack
Also it indicates a progression of peripheral edema and cardiac… read more
How Is Everyone?
Wild type CardiomyopathyAmyloidosis with heart failure
Looking good Dave! Enjoy!
Does Anyone Regain The Large Weight Loss Brought On By The ATTR Disease?
Thanks Francis!
Does AMY Affect Nerves Resulting In Legs Crippled By Pain. Have Wild Type AMY. Been On Tafamidis Approximately Six Months.
Pain originates in hip, travels down to left side of shin. Leg can be so numb that walking is not an option.
Try gabapentin, it helped me
How Soon Can I Expect An Improvement Since Starting Tafamidis?
With Addisons Disease you need salt and fluids .. the exact opposite to AL .
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.
😔
Does Primary Amyloidosis Cause The Sense Of Smell?
Clair...what is HDM-SCT.? I am new to this and can use all the information I can get before I go to the Dr. This month.
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