eating a healthy diet with amyloidosis and amyloidosis | MyAmyloidosisTeam

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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
A MyAmyloidosisTeam Member asked a question 💭

calf and hamstring muscles severe pain when standing or trying to walk

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Foods To Avoid With Amyloidosis Read Article...
A MyAmyloidosisTeam Member

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

Does Anyone Else Have Balance Issues?
A MyAmyloidosisTeam Member asked a question 💭

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?

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A MyAmyloidosisTeam Member

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.

Organ Specific Primary Amyloidosis Can You Explain This Condition?
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A MyAmyloidosisTeam Member

I am suffering from primary Amyloidisis affected on kideny filtration so creatine increased to @8

Has Anyone Taken Tafamidis And Gotten Better?
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A MyAmyloidosisTeam Member

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Will The Site Be Putting Up Any New Material In The Resources Section? Some Of The Material Is From 2021… Maybe A Little Outdated 🤷🏻‍♀️
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A MyAmyloidosisTeam Member

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.

Is There Anyone Else Out There With Cardiac Amyloidosis ATTR Wild With Heart Failure?
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A MyAmyloidosisTeam Member

Yes, I think we all have heart failure and neuropathy with all of the other side effects, I have been treating it with the drugs suggested by my Columbia team and also with strength training, fasting… read more

I Have Cardiac Attr An I Am On Vydamax. Lost Lots Of Muscle Mass Used To Be College Football Player. Is This A Symptom Any Advice?
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A MyAmyloidosisTeam Member

Thank you Gents.. appreciate the info on diets! Hopefully will get some back.. I love liver!!

I've Been Subscribed Jardiance Along With My Vyndaquel. Is Anyone Else Using This Drug, And Have You Seen Results?
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A MyAmyloidosisTeam Member

I take Jardiance and Vyndamax. My cardiologist says it might help ejection fraction.

I Am Wondering If I Should Continue To Take Tafamidis As I Am In Stage Iiib Advanced Heart Failure?
A MyAmyloidosisTeam Member asked a question 💭

I have be taking Tafamidis since March 2022 with no positive changes. I was thinking that due to my advanced heart failure I may not see any benefit by continuing to take Tafamidis.

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A MyAmyloidosisTeam Member

You should stay on meds. It helped my brother a lot. He got a heart transplant las November after thanksgiving and he is doing so good now. I hope I get a prescription soon.

Does Anyone Have Recommendations For Diet,recipes,etc ? I Was Diagnosed With Hereditary Amy In Jan. Of This Year !
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A MyAmyloidosisTeam Member

My husband has to do most of the cooking. I do assist him if he asks. We have cut way down on salt. We use Mrs. Dash seasonings and use garlic powder, onion powder and different spices. The… read more