Amyloid syptoms

as for the heart.swollen tongue can be a sign..same with swolen feet sense of taste completely changed..used to love ketchup, red wine etc,spaghetti..chemo is really dropping the mutated protein levels..some tastes comming back..eating trouble is loose bowels (stempicel? for nausia helping same with emzine and hormone for bowels

I've found some tastes are getting back to normal - just hope it all gets steadily better. My problem was the opposite with the bowels. My son says, regarding constipation & diarrhea, that whichever you have, the opposite always seems attractive!

took 7 weeks in the hospital just to settle thae bowels and blood pressure..slow process but so much better

To put the comment by my dad Chris wrote into context, I've had IBS for years, so we both had digestion problems, but very different ones!

Hope the tastes keep on coming back Mike and all the best for the future.

My mom has and is experiencing all of the mentioned symptoms and from every post. Some symptoms from before diagnosis and some due to side effects from her treatment. Her tongue, feet, legs swelled for three years before diagnosis. After high dose chemo and stem cell transplant her taste is gone and she has frequent loose bowels and nasuea. Which is “normal” I think? Because Her doctors said it can take up to a year to recover from the chemo side effects. My Only wish for Christmas is that all of my my loved ones and all of you that read this, have a VERY HAPPY HEALTHY Holiday and New Year, And that at this time next year we will have all made progress and shared many stories! Best wishes for you all!

thanks everyone for adding comments here..the more the educates us all

I am on a bit of mission.starting slowly but starting....putting things out there information-wise for the medical and general public to chomp on...Felt I should make a good use out of all the time I spend in hospitals etc. Man what a wicked illness amyloidosis is but not unbeatable..

that 7 weeks I spent hospitalized that I have mentioned more than once..let hope even more good comes from it..oh haven't forgotton christmas is near...

octreotitde (sandostatin) is what I take 2x daily through a sub-cu port since my bowels don't work too well with a particular hormone cholestyramine (questran) because bowels don't handle a certain enzime properly...the doctors that put me on these 2 meds have returned some semblane of normalacy to my life..Still far from perfect but at least I can function reasonably well

prochlorperazonine (stemastill) is helping me with nausia which at first was not a problem but I guess as chemo progressed I have more issues