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Does Primary Amyloidosis Cause The Sense Of Smell?
Clair...what is HDM-SCT.? I am new to this and can use all the information I can get before I go to the Dr. This month.
Are There Independent Labs That I Can Go To In Order To Have Complete Proactive Testing Done?
I have lupus and my mom had lupus and cardiac Amyloidosis. She only survived 1 month after they discovered it on an echo. I can’t get my cardiologist to be proactive and test me, so I’ll do it. Just need a place that does it. I’m in Atlanta, GA, but you I’m willing to travel.
Find another cardiologist!!!
Do Any Of You Fellow ATTRwt Sufferers Have Ankle Nerve Problems?
I have had an incrediby sensative spot near my right ankle bone that I am sure is a damaged nerve. I have been to so many neurologists about the pain and none of them can figure out what causes it. I have decided it has something to do with nerve damage from Amyloidosis. The pain is getting worse and spreading over a bigger area. Hard to walk because of the pain some days.
Would love to know if anyone else has this problem.
Thsnk your response. I go to my ATTRwt doctor tomorrow for a 6 month check up. Will ask him what he thinks we should do about the nerve pain. I'll let you know,
Do You Follow A Specific Diet To Help With Amyloidosis?
Up to this point i haven't started to modify my diet. I am starting to realize the impact of to much salt so I'm sure that at some point I'll really have to change that.
What Is Considered A Good Diet While Going Through Treatment??
I personally like basmati rice. And as far as the sugar… well I think a little treat in moderation isn’t such a bad thing. Can’t deny yourself of things either. Life is supposed to be sweet 😉
Maybe… read more
Hi Anyone Taking Metformin For Prediabetes? Or Know Anything About It ?
I have been taking Metformin for years with no problems, it barely keeps my finger sticks under control. 140-180
Can We Get Updated Resource Material?
Some of the material is from 2021. A lot has advanced since then. Would also like to see new numbers on the overall survival OS rates. We need to know with advanced treatments comes better prognosis.
Once you obtain a basic understanding of your disease, your best bet is academic journals. If you struggle with statistics and such, there are explainers/primers out there that make it understandable.
Has Anyone Diagnosed With Wild Type Amyloidosis Noticed Vision Issues, Mainly Blurred Vision?
I have the "Wild" Amyloidosis and seem to be getting larger darker circles around my eyes. Anyone know if this is a part of having Wild Type?
How Is The "progress" Of Amyloidosis Measured? I've Been On Vyndamax For 2 Years. What Should I Be Looking For?
My Amyloidosis Diagnosis came after various Hear Issues...Afib, Aflutter, Heart Blockage. I have 3 stents, and ICD Implant and I'm on Sotolol to control Heart Rate. This in addition to Blood Thinners, etc.
If you read the Vyndamax Patient Information that comes with the meds it says that using vyndamax reduces mortality and hospitalizations. I'm not certain of the statistical significance though. Not my… read more
I Saw An Amyloid Specialist And Exhaustively Went Over My Symptoms. He Was Sure I Have Amyloidosis. Tests Show I Do Not. What Can It Be?
I’ve been treated for CIDP on IVIG for three years. Symptoms are worsening and match amyloidosis perfectly. Muscle weakness and pain, peripheral neuropathy first in feet and then hands, pain in hands and feet with paralysis, AFib suddenly, COPDas a non-smoker, nausea, acid reflux, constant diharrea, Dupuytrans in feet and hands, Raynaud’s I hands and feet, pains throughout spine, much more.
Thank you. The chart is very helpful. I can chart some of what's been done within it but not all.
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