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Age 89, Congestive heart failure, Osteoarthritis, and Glaucoma.
On Vyndamax 6 years
That’s ridiculous!
https://www.drugs.com/search.php?searchterm=Vyn...
I found the above. As far as supplements you could google ex: tumeric interactions with vyndamax. Do each supplement separately.
… read more
Hi Rob, Thx for your response. I have Congestive Heart failure (Diastolic muscles) complicated by Amyloidosis which results in Edema. I wear compression stockings daily and take Bumetanide ( water… read more
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
calf and hamstring muscles severe pain when standing or trying to walk
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
Same here my friend. 3 years too.
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.
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
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 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
PYP results – quote from ASNC Practice Points, cited in 2022
“While grade 2-3 or H/CL >1.5 uptake is strongly suggestive of TTR amyloidosis, any degree of 99mTc-PYP uptake can also be seen in… read more
