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calf and hamstring muscles severe pain when standing or trying to walk
after JUDY AMYLOIDOSIS
I am suffering from primary Amyloidisis affected on kideny filtration so creatine increased to @8
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.
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
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
He has Al Amyloidosis diagnosed August 2023, just finishing last month of Dara cyborD
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
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 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.
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.
To review the Amyloidosis the PET Scan and MRI are done. PET Scan finding FDG avid nodular air space opacity with surrounding ground glassing in the right lung lower lobes with enlarged Mediastinal… read more
Wild type of Amyloidosis. How long have you had it?
Are you on Vyndamax? How long taking Vyndamax? Any prognosis from your doctors?
I was diagnosed in October’23, 1st stage. Been on Vyndamax since mid November. Any help appreciated.
I was diagnosed with wild type last year
Been ln vyndamax for about 6 months. Been doing better. No side effects. I was in stage 2.
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?
