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I Have Very Severe Poly Neuropathy What Can I Do? I Have To Use A Walker Nerve Damage Re EMG. Sudden Severe Pain Back Of Legs
calf and hamstring muscles severe pain when standing or trying to walk
watch that your BP doesn't go too low if it does take hydrocortisone see Endocrinology amyloidosis specialist. Do your ankles swell feet etc do your retain fluid ? Do you take Lasix water pill. Whaya… read more
Will Acoramidis Replace Tafamidis If Approved In The US? Will We Have A Choice?
Anyone See Any Updated Life Expectancy With Tafamidis? Surely Someone Has Updated This Somewhere Since It Has Been In Use For Years Now
Is Anyone Taking Acoramidis (Attruby) Which Was Just Approved By The FDA And Is A Competitor To Vyndamax (tafamidis)
good question . I was wondering if anyone had talked to their doctor about switching or if there was a benefit switching if vyndamax is working?
ATTRwt : Has Anyone Verified Hearth Thickness After Using Tafamidis By Echocardiogram Versus The Thickness Before The Therapy?
I think the only way to really understand how much Tafamidis works is by comparing the heath thickness before and after, at least 1 year of therapy. Has anyone got this information?
Sheldon, is the Acoramidis also manufactured by the same company as Tafamidis and Patisiran?
Does Anyone Else Have Balance Issues?
My husband who was diagnosed about a year ago, but who has had symptoms of CATTR for +12years has severe balance issues. Originally they were blamed on vestibular neuritis, but seem to worsen ever more frequently with "bouts" of imbalance and falls. Sometimes there is LOC, other times he is just soooo tired that he falls down. Drs seem to just shake their heads and seem to imply it is a separate issue
Has anyone else ever had inner ear nerve damage attributed to the amyloidosis?
I had a stroke in Cerebellum that I thought was cause of balance issues ( don’t know when), but I think it may be related. Had gotten worse lately. I have CM ATTR so it may have triggered the stroke.
My Husband Has Been Just Diagnosed With Wild Type Amyloidsis. He Has A Pace Maker (Bradycardia ) Aorta Valve Replaced And Mitral Valve Repa
have been seeing my regular Dr for 30 years but he knows nothing about Amy. He is trying to get some knowledge about it .I know more than he does about this disease.You definitely need a doctor that… read more
Will The Site Be Putting Up Any New Material In The Resources Section? Some Of The Material Is From 2021… Maybe A Little Outdated 🤷🏻♀️
Sean I’m sorry you’re not getting what you need from this site. I might have to agree to disagree on some of your points. I wish you the best on this journey we’re all on.
How Much Coffee Can Be Consumed?
I switched to decaf and never looked back. For me, I had to limit caffeine because of PVC’s
If Diffusional Slows Down The Amyloids , How Long Does It Start To Work,I Heard About 14 Months. Is That So
@A MyAmyloidosisTeam Member just wanted to make sure my question above reached you.
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