Of to royal free on Monday.

[Mummymoors85]

So after thinking it would take ages like all my other appointments turns out it's on Monday.

But I'm going to the amyloidosis centre. I know they deal with lots of conditions but has anyone been due to liver issues??

I think they are now going down the route or a periodic fever syndrome which is quite are apparently but it doesn't normally effect the liver. So this makes me even more unique.

Well with this 3 hr trip there I'm hoping they have some answers. X

[AyrshireK]

Fingers crossed and good luck.

xx

[Mummymoors85 in reply to AyrshireK]

Thank you xx

[jane1964]

Hello,I have pbc an autoimmune disease of the liver, but I also have very serve episodic attacks of widespread muscle pain and weakness which usually last 24 to 36 hours during which I go from perfectly ok to completely disabled needing help dressing etc, these happen usually around every 4 weeks.This has been going on for around 3years, the pbc for 7.My doctor s don't know what it is but one of the possibilities is a type of periodic fever, otherwise they are considering a type of vasculitis, so this is very interesting .I hope you get the answers you need.Jane

[Mummymoors85 in reply to jane1964]

Jane that sounds awful, the royal free is the only hospital in uk that specialise in it.

Might be worth investigating for yourself??

I'm hoping after 5 years of possible this and that I'm hoping to get some answers.

Carla

Xx

[jane1964 in reply to Mummymoors85]

Hello Carla,

Thank you for replying, yes it's not nice when it flares up, my rheumatologist is stuck I am seeing her in a few weeks I think I will ask about the royal free,

I hope you appointment goes well and you get some answers.Jane