[mattlParticipant]

hello mrs doyle,

sorry for the delay in replying, i have been the luckiest person in the world! my diagnosis was done in 3 weeks!!

symptoms that led me to A&E was breathlessness, just couldnt take in air, doctors fixed it but then came back and said I had a serious heart condition, they wouldnt give up trying to find the answer, after many many scans was told it was cardiac amyloidosis.

now i know more, there were symptoms, during lockdown june 2020 my ankles and feet swelled up, i just thought it was because i had been doing physical work all my life and then bang, we all stopped and i sat indoors a lot drinking tea!

matt

[mattlParticipant]

hi leslye, claire,

so far it has all sounded quite straightforward, but now i`m getting scared and apprehensive!

matt

[mattlParticipant]

Hi Martine,

my name is Matt, I have never been seriously ill in my life, all i have ever had is man flu. im 57. got taken to hospital and final diagnosis was cardiac amyloidosis. Couldnt get my head around it – how did this happen, what`s going on etc etc. – took me a few weeks to get over the shock, but the shock was the biggest thing!! my head was spinning. same as you, no symptoms, or signs that made me think something wrong.

take your time, the shock will gradually go and then you will be able to start pieceing it all together.

first thing is ok ive had this diagnosis, lets wait and see what the doctors tell meand take it a step at a time, dont try to think too far ahead yet.

[mattlParticipant]

hello Hoffgrad,

ill keep it short, one night i went to bed, couldnt breathe properly, after 4 hours of gasping for breath i called an ambulance. taken to local A&E, doctors said chest infection, pneumonia of lungs youll be fixed in 4 days. Next day same doctor came to me and said you have a serious heart problem. after many more scans the heart specialist referred me to NAC. Cant thank them enough for what they`ve done for me. 3 months from original A&E call to be diagnosed and treatment starting.

[mattlParticipant]

hello Dave

i`m 56 years old, never been ill in my life, except for man flu where i would just go to bed for a day and sweat it out.

then in august i was breathless, ended up in A&E, and after lots of scans was diagnosed with cardiac Amyloidosis, similar to Myeloma but not quite the same.

The shock was the biggest thing of all to get over, here i was, never been seriously ill ever, and suddenly i have a rare and life reducing disease inside me!

my urine is frothy, i have trouble with my kidneys (or so i thought). I have had every scan and test there is for every vital organ.

when I asked my amyloid specialist about my kidneys he said there was nothing wrong with them, it is my heart which can`t pump the blood round my body properly, let alone pump the fluid out.

experimenting at home i have found the less i drink the better i feel.

i have found that drinking no more than 3 cups of tea or coffee a day plus a mugs worth of water when taking medicines makes my kidneys work better.

perhaps keeping a note of your fluid intake, and altering the amount each day may help you.

its trial and error im afraid.

the mental shock takes time to get over but you will, there comes a day when you accept your situation and start becoming more positive in your thinking/attitude towards it.

just out of curiosity, have your legs, ankles, feet swelled up?

regards

matt

• This reply was modified 3 years, 1 month ago by  mattl.

[mattlParticipant]

please,

please…do not go by what your internet search engine brings up, the only site to go to/start with is the official nhs website and go to any link provided by them.

but more importantly of all, be patient and wait to hear what your doctor/specialist tells you. they are the ones that know, not a keyboard warrior sitting in another country!

regards

matt

[mattlParticipant]

Hello hoffgrad,

I have MGUS light chains in my bone marrow which has caused my amyloidosis.

perhaps you can get a referral to the National Amyloidosis Centre at the Royal Free hospital, Hampstead Heath for tests and scans.

I was referred there by a cardiac specialist at my local hospital because I was diagnosed with cardiac Amyloidosis.

the chemotherapy kills the bad light chains and stops them entering the blood stream in the first place.

I don`t know if this would be of any relevance to your condition, but I thought it may be an avenue to explore?

regards

matt

[mattlParticipant]

hi Leslye,

I have AL amyloid.

I was diagnosed in august 2022, have been to the Royal Free hospital, Hampstead Heath for the three day test and scans, and am now to-ing and fro-ing between UCH euston road and McMillan cancer centre, Huntley street.

have just started my chemotherapy oct/nov 2022.

i`m near gatwick airport, sussex/surrey borders, whereabouts in the country are you?

just discovered the nac forum for amyloidosis is being closed, very very sad news

regards

matt

• This reply was modified 3 years, 1 month ago by  mattl.

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