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Real members of MyAmyloidosisTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

Featured Q&A

Which Amyloidosis Symptom Surprised You The Most?

By A MyAmyloidosisTeam Member 73 answers

What's On Your Holiday Wish List That Could Improve Your Life With Amyloidosis?

By A MyAmyloidosisTeam Member 41 answers

What's A Common Misconception About Amyloidosis?

By A MyAmyloidosisTeam Member 24 answers

What Amyloidosis Symptoms Keep You Up At Night?

By A MyAmyloidosisTeam Member 37 answers
818 questions

Why Did It Take Doctors So Long To Figure Out What My Husband’s Disease Is?

A MyAmyloidosisTeam Member asked a question 💭
Franklin, NC
A MyAmyloidosisTeam Member

It took almost three years of visiting our family Dr and getting referrals to specialist for the various symptoms my spouse was presenting with over this time. Nobody connected the dots and only… read more

September 2, 2023

Symptoms Amyloid Peripheral Neuropathy

A MyAmyloidosisTeam Member asked a question 💭
Ireland, IN

Hi. I had a numbness feeling in my left arm and hand for a few weeks about 6 months ago. It disappeared so I didn’t think too much about it. It’s back again now for a few weeks and I sometime get slights pins and needles in the tips of my fingers. Could this be a symptom of neuropathy? Could it be there for a few weeks, disappear and then come back again? I have hATTR cardiac Amyloidosis and am in Vyndaquel for 8 months now. Thank you.

A MyAmyloidosisTeam Member

Me too, Edward4. Mine is worse in my hands. I was not affected by Covid at all. I'm getting the RSV shot soon.

7 days ago

Can People Live 10 Years With Almoilafes

A MyAmyloidosisTeam Member asked a question 💭
A MyAmyloidosisTeam Member

I think it depends on the person, the organ involvement, when treatment was started. There’s a lot of variables. Try to be positive and don’t put a number on it. There is lots of meds in their final… read more

August 31, 2023

Management Of AL Amyloidosis, Cardiac?

A MyAmyloidosisTeam Member asked a question 💭
Indian, AK

General Feedback for improvement in Medical Management by Hospitals for the Patients of AL Amyloidosis and Cardiac one in Particular: ( Draft as on 30/08/2023)
In order to address the issues and concerns regarding the management of Cardiac AL Amyloidosis, it is important to initiate a debriefing session with the medical team involved in the patient's care. Even the explanations offered on the pathways of treatment as Immunotherapy + Chemotherapy as against BMT are vague ,unclear, and scary with… read more

A MyAmyloidosisTeam Member

Mr. Joel - I am following your advices that are very meaningful. I was looking for AL Amyloidosis, Cardiac Specialist ,who may contact through Teleconsultancy
I was curious to get the Q & A Bank… read more

September 15, 2023

Accidental Post Deletion

A MyAmyloidosisTeam Member asked a question 💭
Sacramento Area, CA

I deleted a post that was a reply to Satish Chandra and it seems to have deleted the entire thread. Can someone restore the thread?

A MyAmyloidosisTeam Member

Thanks for your guidance, purchased the Book- a great read How to be Sick by Toni Bernhard and also bought the monthly subscription of Uptodate.Com
However ,still realize that the cure is far from… read more

September 7, 2023

Are Antibodies Used To Treat Attr Amyloiosis

A MyAmyloidosisTeam Member asked a question 💭
Anderson, SC
A MyAmyloidosisTeam Member

Not sure!

August 27, 2023

What Antibodies Used To Prevent Wild Type Amyloidosis

A MyAmyloidosisTeam Member asked a question 💭
Anderson, SC
A MyAmyloidosisTeam Member

My husband has wild type and he is only on Vyndamax. We've never heard of a preventive treatment. He goes to Penn Cardiac in Philadelphia. Please keep me posted if you find out anything new and I will… read more

September 2, 2023

Can Stiffened Left Ventricle Wall Caused By Amaloids Be Fixed By A Septal Myectomy?

A MyAmyloidosisTeam Member asked a question 💭
mexico,mexico

Anyone Experiencing Weight Loss?

A MyAmyloidosisTeam Member asked a question 💭
Evans, GA

I have HATTR Amyloid resulting in my having Cardiac Amyloidosis and Peripheral Neuropathy. I am taking Vyndamax and soon to start Amvuttra (spelling) could these be the cause of my weight loss.

A MyAmyloidosisTeam Member

My wt goes up and down like a thermometer ... I went from 194 to currently 154 and I am 5'6 I don't have to exercise..I have no appetite at all but like I said I have reported this and my friends and… read more

December 11, 2023

Anything Out There To Remove Existing Amyloid.

A MyAmyloidosisTeam Member asked a question 💭
Scotland uk
A MyAmyloidosisTeam Member

Is not Alexion AZ has started phase 3 Clinical Trial not included India?

August 26, 2023
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