British Liver Trust
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autoimmune hepatitis

good day I was just diagnosed with autoimmune hepatitis. its not contagious kind thank got. but still very bad.all my liver enzymes high and my vitamin d nill and void my inflammation numbers high as well as my smooth muscle panel high and some other high numbers as well. nausea and unwell and tired no energy lots of muscle pains everywhere in my body from my rib muscles to arms to legs etc lots of lightheadness and gait problems then my nerves in my lower body felt like they were on fire and my upper nerves likes pins and needles with bad headaches and lots of nerve pressure in the back of my head then throwing up bile every other day and dark pee and clay poos. 2 years of this extreme illness before drs finally put it all together and did the right tests needed. now im going on heavy steroids and autoimmune drugs and I got put on a list for a liver transplant. don't know if il go that far as really hoping the treatment plan will reverse some of these symptons so that I can at least live a day not sick and in so much pain. have a few other autoimmune issues as well I guess but the liver one affected every part of my body from my toes to my head and all the guts in between. guess its a hard one to diagnose but I guess ive had this condition for a very many number of years with just little minor symptons that were misdiagnosed for years. big blow 2 years ago finally got me thinking I was dying and started pushing and fighting with every specialist for the past 2 years. it was worth the aggravation as now I can finally start treatment and get a little help. hope this may help some feeling the same way so that you don't have to suffer to long before they figure it out happy newyear

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Hello Monicalynn, welcome to the forum. Like you my hubby has auto-immune liver disease, his had reached the stage of cirrhosis with late stage symptoms before it was ever discovered and he spent time on the liver transplant list from 2014-15. Unlike you his AIH is deemed to be 'burned out' and inactive and he is only on a maintainance dose of steroids without the immune suppressant. But due to cirrhosis he is very closely monitored for signs of worsening and a renewed need for transplant.

I don't know whether you do Facebook or not but ther is a fantastic AIH support group on Facebook with over 1400 members world wide but UK based. It is staffed by fellow AIH patients and members include both patients and loved ones of patients like myself. The support group has regular meetings in either Birmingham or London supported by some of the top professors in the UK who work with AIH every day and also there are smaller groups of members who meet up locally around the UK for more social gatherings and to share woes and support.

Page is at :- facebook.com/groups/AIHorgUK/

Glad doctors have finally worked out your diagnosis, AIH can be tricky and it's largely by process of elimination that they finally get there. Fingers crossed that either it goes under control and the need for transplant reverses or that transplant comes quickly and you can get on with life renewed.

All the best,

Katie

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thanks Katie I live in Calgary alberta Canada and because I cant work anymore I really don't travel outside Calgary but I just got diagnosed today so im sure I will find something here. I have counselors now which helps. ive been dealing with a lot of illness over past 25 yrs including cancer twice so its not that much of a blow to me. im just glad they got me diagnosed as my son who is only 27 is having the symptons im having starting now only milder so now it will be easier for him to get the diagnosis. its a genetic dna screwup in our family blood lines and myself and my father have this as well as my nephew who is only 18 so im pretty sure that's the same for my son. its very hard in Canada to go through the process takes long time and lots of fighting the health care rules and costly as well but it will be easier for my son now which is what im thankful for. I deal with my thing one day at a time and do what I am able on that day. I hope all goes well for your family I know its hard on the entire family. I hope miracles happen for all of us

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Dear Monicalynn

Welcome to our forum, we hope you find it helpful and supportive.

There is a liver charity in Canada similar to the British Liver Trust who may be able to offer you some local support and information. Please see:

liver.ca/we-are-liver/about...

Best wishes

BLTadmin team

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Hi I just came from your comment on my post and would like to say this post is most helpful and informative for someone who has been waiting over 5 months for a diagnosis. Two years is a very long time and I hope too they will be able to reverse some of those symptoms for you. I wish I was clued up on this and could help you further with advice but I'm still trying to get a diagnosis. Thank you for this post happy new year and best wishes.

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Hi monicallyn; your certainly going through it but hopefully you can see the light now: I am 6 months post-transplant and doing really really well so hopefully it will happen for you too

A very happy new year to you as well

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