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Does WILD "A" Affect Glaucoma?
I had a stent put in my left eye 3 years ago and now have about 10% vision. Right eye has about 80% vision. My understanding is the Glaucoma attacks the optic nerve and there is no cure available. I… read more
Does Anyone Experience Any Side Effects With Tafamidis?
My husband just started this week . Great to hear about no side affects . Praying for a healing for your knee.
Is This Early Stage?
I have an enlarged liver (19cm) and protein in my urine but not showing up in my blood My basic blood work is otherwise normal. I am waiting for my provider to confirm the diagnosis.One year ago I lost 1olbs weight and I have neuropathy in my toes but no other obvious symptoms. Does this sound like early stage amyloidosis?
Additional thought to earlier post: With hindsight I can specify when to the week I became infected with AL almyloidisis. In late Sept 2020 my VO2Max started a long dive . VO2Max is available from… read more
Has Anyone Else Experienced The Loss Of Walking
My balance has gotten worse even with the use of my walker also my carpal tunnel has gotten worse any suggestions
I have wild type ATTR cardiac and I am in a wheelchair. My balance is Terrible. I am using Aqua therapy, land therapy, infusions, acupuncture, neuromed electrical therapy and cold laser therapy. I… read more
Did You Have SCT/HDM?
If you did what are your thoughts? Are you glad you did it? Knowing what you know now would you do it again? Did you achieve the results you thought you would?
Stem cell transplant/ high dose menalphan
What Is Expected Post 20 Infusions Of Dara+VCD - On Remission From AL Amyloidosis Cardiac?
Though the Hematologic Response to Dara+ VCD seem good for Hematologic Response in last 6 months but the bio-markers, MRI reports, ECG reports are not encouraging for cardiac health. How to handle the situation that is close to Heart Failure, Hypotension, and allied health conditions.
Thanks a lot but I am 65 +
What Has Been Your Experience With Vyndamax?
So far I’ve had no issues with Vyndamax it’s some of the other medications I’ve taken that had given me bad side affects.
Anyone Experiencing Sun Burn Type Torso Pain During Chemotherapy?
Is Anyone Out There Taking Pomalyst, Also Called Pomalidomide? If So, How Is It Affecting You? How Long Have You Been Taking It?
I have been on it for 13 days now and I'm experiencing a great deal of swelling in my legs, feet and stomach. Also I am experiencing more fatigue than when I was on the standard treatment for AL Amyloidosis.
I am on Vyndamax
Anyone Have Eye Problems With AL Amyodosis?
I have been diagnosed with AL amylodosis since Nov. 2022 and have been taking Chemo treatments since then. I have recently been having eye problems ie looks like stys with irritations. Has anyone had any eye problems with AL?
Hello, an update on my spouses eye issue. Our Amy specialist was not aware of eye issues related to the chemo my spouse is having. We again went to our eye Dr and got a new drops. At this appoint a… read more
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