Can anyone give advise about Amyloidosis

Abbie65

Hi

I wondering if anyone knows about Amyloidosis. I have been misdiagnosed for many years, hitting my head off brick wall with all different consultants. They now think as some tests have come back that I probably have AL Amyloidosis. Not been given much information and waiting for an appointment (urgent referral) however I have googled it and have scared myself

So I’m am wondering if anyone has this or knows anyone with it apparently it’s very rare maybe only 1-13 in a million worldwide are diagnosed each year

Any help would be appreciated

Thank you

chiarieds

Hi @Abbie65 - it's really difficult when Drs don't know exactly what you have, & can bring a sense of relief on the one hand when they think they've found out what 'it' is, & on the other some understandable trepidation on learning what this may be.

Don't scare yourself, there are treatment options (tho not without side-effects in some) that can help. If it is AL Amyloidosis, then perhaps it's, tho quite rare, a little more common than you may have realised, which is good, as more is known about it.

This is a lengthy read, but I hope worthwhile:

https://www.myeloma.org.uk/wp-content/uploads/2023/10/Myeloma-UK-AL-amyloidosis-Essential-Guide.pdf

Abbie65

Many thanks, I really appreciate this

All my GP said to me it’s very bad, can treat for a while not curable and my life is limited

Then I’ve been left as she can’t answer anymore, so I appreciate this

Thank you so much