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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
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.
Yes, I think we all have heart failure and neuropathy with all of the other side effects, I have been treating it with the drugs suggested by my Columbia team and also with strength training, fasting… read more
Recent diagnosis from bilateral CTS. Mayo says ATTR, Cardiologist suspects wild type. Kidney, liver cardiac tests normal. Anyone receiving tafamidis therapy to prevent further progression of disease. In my option, seems tragic that a patient has to progress to some level of cardiac failure before starting treatment if Vindamax or other tafamidis can slow progression.
I have PN as well. Entire left side, and now moving to my face this morning. My son got his meds in 3 days. It will be a week this Tuesday for approval of grant. How do you pay for med?
Sean I’m sorry you’re not getting what you need from this site. I might have to agree to disagree on some of your points. I wish you the best on this journey we’re all on.
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.
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?
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I am suffering from primary Amyloidisis affected on kideny filtration so creatine increased to @8
You should see a gastroenterologist. Maybe an endoscopy & colonoscopy and have them specifically biopsy for amyloidosis. If they don’t test for that specifically they’ll miss it. Visually everything… read more
