Af and amyloidosis

[howesgilly]

Does anyone on here also have amyloidosis? I am now being investigated for this as a possible causeof the af

[jeanjeannie50]

Sorry, it looks like no one knows anything about amyloidosis. I have to admit that I've just looked it up online and have never heard of it before. Interesting though. How were you diagnosed with it?

Jean

[10gingercats in reply to jeanjeannie50]

There is an Amyloidosis Centre at the Royal Free Hosp. in London with its own website.It is a complex condition so best try and scoop all the info. you can by searching sooner rather than later. Someone I know was being investigated. It is a rare condition.

[howesgilly in reply to jeanjeannie50]

I haven't been diagnosed yet. My nan had it and I have alot of symptoms which includes the af and had ablation for. Only just putting 2 and 2 together and wondering if it could be the reason why I appear to have the body of a 70 year old at the age of 44!!

If I find anything out and get a diagnosis positive or negative I will let you all know.

Would prefer not to have it...not a nice condition. Makes the af slip into insignificance

[Diddygran]

Hi, just joined.. I have Fibrinogen Amyloidosis & yes am under the NAC at the royal free. I have ckd 3b & kidneys gradually failing. No cure however i am on an unlicensed drug for compassionate use which has slowed kidney failure in some patients. Still early days but back down London Wednesday.

Only symptoms really tired but no pain etc.

Difficult to find anyone to talk to as so rare (130 in country)

Diddygran

[howesgilly]

Sorry to hear that diddygran. I was tested and all tests were normal so I dont have amyloidosis just have crap joints and blood in my wee, indigestion and the previous ( so far so good post ablation) af at 45. Despite being fit doing 4-5 exercise classes a week and following a good healthy high protein diet.

If I find anything else out will let you know