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Can we reduce dialysis frequency from two per week to one .As my c
reatine level is @7 to 8
There is a current trial underway to determine just that, HELIOS-B (NCT04153149) , but results not anticipated until 2024.
So you’re bedridden? Again I can’t give you a timeframe only God knows that. You’re still using your phone and you’re not in hospice so that’s good. I’m sorry I can’t be more helpful. I am here and so… read more
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Ive had Amy in my heart fir over 6months
&feel it's now in lower parts..Dorothy
My husband has peripheral yneuropathy and has had carpal tunnel, waiting to hav neurology consult confirm R/t amyloidosis, if so he had this for sometime before we knee it was affecting his heart too
Interesting. My husband was recently diagnosed with WT ATTR after a heart problem. He has had lumbar and hip pain for 3 months which he attributed to arthritis. I am now wondering if it is related to… read more
He had mood changes last several years and last year echo stress was ok and he had three falls. I bought this up with our neurologist he did not feel he had amyloidosis ? I feel other than the cardiac diagnosis he had many of the symptoms please advise , He on aricept 2 weeks they plan to start the IV latest treatment in may and we waiting for insurance to auth. Please advise
Depending on where you live - going to a well known medical center can make a difference and second opinion is always good idea!
ATTR CM, three years diagnosed and still hungry. Roy2
I have wild ATTR amyloidosis for past 2 years lost 10 lb & not able to gain weight
I believe you need to rule out AL amyloidosis with blood and urine tests first . But yes, a PYP scan can determine if you have it or not.
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