The sign that gave my cardiologist the clue about me having amyloidosis was that I commented that I had bitten my tongue more than I used to because my tongue seemed bigger than previously, & he subsequently told me it was that comment that really gave him the clue. Has anyone else noticed this?
Anything that can help to identify the amyloidosis as soon as possible must be worth knowing - & passing on to the doctors.
Very interesting Chris. Thanks for sharing! I bet that helps folks!
My mother told numerous doctors of her “swollen tongue” for two years before being diagonosed.
It is so true, With each story shared it will help build and stengthen the future awareness of the symptoms and signs and aid others in a timely efficient diagnoses. Best wishes Chris!
I also found that red wine & beer didn't taste "right". Wine nearly all tasted much the same & wasn't particularly nice. This must have been happening for a couple of years before I was diagnosed, & started a few months before I had noticed that my tongue was swollen.
My mother passed away 2 months ago today and her main complaint was constipation with no relief and then about 5 year ago she started having syncopal episodes that would last a matter of second almost like a seizure, she new when this was going to happen.
Also, she started feeling dizzy November 2011 and did notice an abnormal pulse and notified her primary physician.. her diagnosis at the time was Left sided CHF.
After her diagnosis this May,I asked the doctor to go back to a previous biopsy that was done 4 years ago of a polyp she had in her intestine and surely enough there was amyloid. Doctors completely missed it.
Hope this helps.. Dx May 2012 with Al amyloid passed away October 2012 from cardiac arrest
specialists check me for a swollen tongue..not yet but it gets very dry.have some amyloid cardiac issues..minor so far
Mike - mine is (or was) mainly in one ventricle & I became very breathless if I walked uphill or climbed stairs. Two or three times I woke up in the night really struggling to breath - which is horrible, especially the first time because you don't know what is going to happen. All you have to do is lie quietly & after maybe a minute your breathing returns to normal.
I've had 28 weeks of chemotherapy (Dexamethasone/Cyclophosphamide/Thalidomide) finishing at the end of September & it seems to have done the trick as my heart is steadily improving. Fluid retention was the worst side effect because my legs swelled & I got to the point where I could hardly walk. The other thing was fluid in my chest cavity, which reduces your lung capacity. That is the one bit that is still a bit of a problem, & the cardiac team are talking about draining my chest with a syringe. I had that done in May & it is brilliant - instant relief. Mind you they removed 1.5lt (just under 3pts) of fluid so you would expect some effect!
I’m five years out of active A1 amyloid. I had it attack my kidneys, heart & skin. To date after 1 1/2 years of chemo every week. What I’ve noticed since being in remission is shortness of breath, fatigue swelling legs & achy joints. I’m blessed to be alive. It was tough but worth the fight.