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My husband was diagnosed with AL Amyloidosis in November 2023. I started seeing changes in him going back to about 2017-18
He’s always had yearly physicals that were normal, so I just thought maybe he’s getting older. Looking back I’m wondering if it’s was the beginning of what is now an advanced stage of AL Amyloidosis. Any thoughts are greatly appreciated!
I believe we carry the disease lo g before it is diagnosed. The way mist diseases go, they lie recessive for years and by the time they show up they begin to start giving us trouble. I was having… read more
Sad, sorry to hear that. What meds/ treatment are you on. I will be starting daratumumab and Revlimid very soon.
I think I have ATTAmyloidosis- still working on diagnosis - and have had spinal stenosis for years. Walking is getting progressively more difficult, and I am just wondering if this is related to the amyloidosis
It is beautiful!!
Always verbal.Know he is tired and it's hard having to help with house hold when that was never part of ťhe deal before.
Vern, kudos to you for being proactive and getting your end of life book assembled! It will allay many fears that your wife might have about the future when you pass away. You can also sit down, once… read more
Just diagnosed at 57 w/ AL. In process of getting two opinions.
Hate to hear about your back problems Vern. I. didn't know amyloidosis could do that. I wish you a pain free future.
Yes Mary.
Dear Jim233. If I knew I’d be gone tomorrow, I’d be out there spending every tiny bit of money I have. (Ha ha). Seriously, God onlly loaned us to this earth and he can recall us at any time. My… read more
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.
I had tremors but they are so much better as is my pain and neuropathy. I have been doing acupuncture, neuromed electrical therapy, and cold laser therapy. I have had 68 treatments so far. I have… read more
Suffer from wild type attr
It's a pleasure hearing from u & appriciate & hug u back
