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Has Anyone Had A Negative Cardiac Biopsy?
I have so many signs and symptoms of Amyloidosis; from cardiac hypertrophy to ruptured bicep tendon to stiff heart to enlarged tongue, but a negative biopsy. Help??
I'm guessing it depends upon the tired of amyloidosis and three specific protein and generic markets involved. But it's really a question for your doctors!
All the best to you in your research
Joel
Can Anyone Tell Me An Estimate As To When CRISPR Will Be Used To Stop Amyloidosis Wt ?
I believe it was, but of course, there would need to be a consideration for how long the CRISPR worked, and what side effects were seen.
How Do I Directly Message One Member Without Posting To All?
I also used INVITAE for my genetic testing. Their test results ruled out genetic causes of my Amyloidosis as well as other medical conditions.
Is Anyone On Patisiran That Could Share Thoughts On How They Are Doing? I Have Wild Type..Jeffrey
Mary Ann. I pray things improve for your husband. I keep thinking we all have different DNA and genes so these drugs may affect us differently. I am going to quiz the Dr.s in my Patirisan infusion on… read more
I Think We All Want To Know About Time. And The Progression That We're Going To Go Through.
Does walking finally stop?. Do we continually get weaker? Do we lose the control to urinate? Is living in the presence now just living with the uncertainty of the progression? Will it finally take us when we don't have a heart transplant?
Hello Everyone, I have the Amyloidosis AL with cardiac. My heart problems have got worse so I was referred for a heart transplant but that doctor had some tests ran, and long story short they said a… read more
All Have A Great Weekend
I had fat pad no mistaken report. Cardiac One got confirmed based on heart symptoms, lymph nodes biopsy, and bone marrow test. Dara+VCD responding. I am in Delhi India and under treatment of one of… read more
How Do We Know Whether Our Medication Is Helping Us?
Can Any Thing Be Done To Reduce Existing Conditions?
Fibrils in scalp, muscles, tendons, colon etc
Hi Sheldon,
Spoke to the NAC and was told that i can only be on one drug trial at a time and can not have PRX004 or EGCG in parallel, although they work differently, appreciate that trials are… read more
On Your Road To Diagnosis Did Anyone Have A False Negative Fat Pad Biopsy Result But Still Have Clinical Systemic Amyloidosis Symptoms?
Yes! I did but my cardiologist did the definitive PYP SCAN and I’m positive for cardiac Amyloidosis. Most all PYP Scans are done in hospital or major medical center like a university. Ask your… read more
Fellow AL Amyloidosis Sufferers, Has Anyone Experienced One Swollen And Painful Ankle And Discovered The Cause And Solution? Thanks, Norm2
I was on fludrocortisone and that was the culprit of my swollen legs and feet. Switched meds and 100% better. Still have some slight swelling if I stand or sit too long.
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