first ever world amyloidosis day on october 26 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 đź’­

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 đź’­

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

My Question Like This In Group Have A Member Who Is Feeling Good After The Medicine .
A MyAmyloidosisTeam Member asked a question đź’­

hi group members sorry my English not good. I am try to translate and ask my question. Sorry for my English I am 35 years I have a HTTR . my health problems start after the pregnancy. My son born 2016. my son burn her leg. after that start my health problem. I am feeling very bad. I am start vomiting, nausea constipation dizziness heart problem and walking problem nothing help me for doing good. We are trying everything. We are see more doctors, but the doctors doesn’t understanding what’s… read more

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A MyAmyloidosisTeam Member

Just a side comment. Gayane, you are brave to communicate to us in English when your base language is something else. It would be very difficult, with 'tables turned', for me to communicate in your… 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 🤷🏻‍♀️
A MyAmyloidosisTeam Member asked a question đź’­
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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.

Hi Dan From Calgary Asking After Taking 10 Mg Of Dex 2 Hours Before Treatment Increases Your Blood Pressure As Mine Seems To Go Up
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Has Anyone Experienced Tongue And Taste Issues? My Hubby’s Tongue Is Scalloped On The Edges And Nothing Tastes Good.
A MyAmyloidosisTeam Member asked a question đź’­

He has Al Amyloidosis diagnosed August 2023, just finishing last month of Dara cyborD

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A MyAmyloidosisTeam Member

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

Is There Anyone Else Out There With Cardiac Amyloidosis ATTR Wild With Heart Failure?
A MyAmyloidosisTeam Member asked a question đź’­
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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

After 24 CyborD +D Treatments I’m Still Not In Full Remission, Or CHR. I Have AL Amyloidosis. What Is Next? How Can I Get Into CHR?
A MyAmyloidosisTeam Member asked a question đź’­
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A MyAmyloidosisTeam Member

Hi Jen
Meant to get back to you yesterday. I apologize for the delay.
I did 3 Cycles of CyBorD.
4 cycles of Dara, Velcade and Dex
8 cycles Carfilzomib, Revelimid and Dex

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 đź’­

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.