Worried !

[WillowW]

I am new here, haven't got my head around everything yet so I am still at the worried stage, I look forward to interacting with you all in the future

[Ballymahon2]

Do you have pbc

[WillowW in reply to Ballymahon2]

Yes, I had been diagnosed with a fatty liver, but after another blood test recently my GP said you have PBC...said she would refer me for a liver scan and said..I think it's time to see a specialist. I am very worried after reading so much stuff on the internet, and have been looking for dietary advice..but still unsure...How are you ?

[Ballymahon2 in reply to WillowW]

I was diagnosed in oct 2017 awful shock at the time asymptomatic

Find this support group great

Also attend a support group in ireland

They say it takes 6 months to get used to a diagnosis of pbc

I am on urso and my levels have come down

Are you ama positive

[WillowW in reply to Ballymahon2]

What is ama ?

[WillowW in reply to WillowW]

Yes I think so..my GP just said you have PBC and I asked her to write it down ..

[gwillistexas in reply to WillowW]

Anti mitochondrial antibodies

[gwillistexas in reply to WillowW]

AMA M2 is suggestive of PBC.

[WillowW in reply to gwillistexas]

Thank you, currently I have an appointment for an abdominal scan, but no specialist appointment as of yet, so no access to medication as this time...very worried though

How are you ?

[gwillistexas in reply to WillowW]

Hi WillowW...I am doing well, thank you. I understand your worries. I didn’t take the diagnosis very well as I have always been healthy. My dr kept telling me this is not a death sentence. He then referred me to a GI who treats a lot of liver ailments. My Internist gaff already ran all the labs & ordered ultrasound. Ultrasound was normal. He sent all labs & ultrasound report to the GI. Gi then followed with a fibroscan. I scored low end stage 2 fibrosis in duct only. Liver is ok. We can all tell you not to worry, but we’ve all been exactly where you are. I was diagnosed last June & it took quite a while for me to accept & come to terms with it. Once you have all your tests I think you will calm a little. Remember, you have a host of people here who are supportive & caring. 🦋

[WillowW]

I only have an abdominal scan planned at the moment , waiting for a specialist's appointment

[gwillistexas]

With all due respect, it doesn’t have to be a hepatologist. There are good & well qualified GI drs who treat PBC as well as other liver issues. I’m sure her dr will refer where she needs to be. Whether it’s a hepatologist or a GI, so be it. We have no right to tell anyone who they “need” to see, nor do we tell people they need to start Urso right away. That’s is why she has a dr.

[gwillistexas]

I saw my GI in the beginning. I now see his NP who has been with him 20 years. She has provided me with a wealth on information. I will continue to see her (my choice) unless a problem arises. To each his own.

[gwillistexas]

I could probably put my GI up against most hepatologists any day. You have a nice day too.

[Hidden]

Newly diagnosed I would suggest you look at the PBC foundation web site for information about pbc their link is on this page. Please be careful of what you read on the internet a lot is old and out of date I scared myself silly when I was diagnosed the pbc foundation information is up to date.

You can contact then directly for a chat if your worried. I did when I was diagnosed 8 years ago and they did put mymind at rest and for the most part, thankfully everything has been stable taking just the urso.

Let us all know how you get on there’s a lot of support on this forum and a lot of knowledge but we are not doctors just fellow sufferers, a lot of the time someone will have the answer to your question but ultimately you doctors need to be consulted. Take care

[teddybear7]

I love your 'im still at the worry stage'. I don't think that really goes. It gets parked a bit whilst life goes on around us but raises it ugly head once in a while. I see a gastroenterologist, no heptologist near me. I'm lucky he's ever so good & so is my GP.

I'm 4 years down the line. I found that the drs & specialist didn't tell me much. I found all my knowledge from the PBC Foundation. Who really were & are my rock. This site here helps when I have a weird querie as you can normally find others whose had similar so you don't feel so alone coping. I avoid the general internet. Lots of old info & scare stories. & I don't do extreme diets. Just low fat & healthy. Get your specialist to check your vit d levels. Mine were really low & it does help. Xx

[IOW-gal]

Try not to read too much on the Internet. It's usually outdated nonsense. The BPC Foundation have a wealth of knowledge along with some contributors on this forum. But you need to remember we are all different and sometimes have other problems alongside the PBC. Best wishes Eileen

[WillowW in reply to IOW-gal]

I do apologise for miss spelling your name..it was very remiss of me..

I do hope you are keeping well

[IOW-gal in reply to WillowW]

No problem at all. Take care

[WillowW]

Hi Ellen, thank you for your reply, yes , you are so right about reading too much stuff on the internet but you I just can't help myself....I have already been blown away by the great replies I have already received yours included.

Again you are so right about we are all different and although I was born worrying I will get my head around it when I have seen a specialist. I live in the North East of England so my health service runs differently..I have to wait till my local Doctor writes to the NHS and requests things like scans specialists etc , then we wait for appointments to arrive by post.

This all adds to the stress, but I have received an appointment for a scan so hopefully I am on my way to a diagnosis and treatment.

Thanks again Jacklyn

[mrspeffer in reply to WillowW]

Good Morning...of course you are worried. I remember going into a deep funk for a long while when diagnosed. I had no real support team then, which made it worse. Then, anytime I had an itch or a pain, I thought for sure, this is progressing fast. Well, 20 years later, I find the times around lab work and Dr. appointments to be fretful, but I'm still here and doing ok. Somedays the fatigue is heavy, but that is why we have naps and soothing teas. Surround yourself with those who understand and remember Rule 62... "Don't take yourself so seriously." Most articles I've read say we will die with this, not from this. Not to say we aren't to take care of ourselves, but I suppose there are far scarier disorders to have. Stay as healthy and free from junk and stress as possible and find happiness everyday

[WillowW]

Hello and thank you...you are spot on ..every little itch and every little ache in my tummy has me thinking just that..as in here we go...getting worse ..I knew it...

I am delighted to read your message as it sounds so helpful and positive, I can't get over the amount of lovely messages I have received since saying hi on here...although the medical system is different here in England and is deteriorating by the day under our current diabolical government, I am lucky to have a scan planned for next Monday and await the chance to see a 'specialist' at some point..and, as you so rightly say people face far scarier disorders...I will turn my frown upside down..and thank you again for your lovely message

Jacklyn

[Sicksamo]

Hi there - me too! I don’t even know where to start. I have so many ???

[WillowW in reply to Sicksamo]

Hiya...so many good messages ????

[EileenUSA]

Hi,

We've all been there with diagnosis shock and adjustments. You will find your balance as you go.

This site is a fantastic source of peer support and info.

pbcfoundation.org.uk

Also you should join the PBC foundation ( they are the sponsors of this support forum). Link above.

it's a separate membership from this peer support group. You create a User Name and PW ( it's free). And then you will have access to current medical-scientific info about PBC.

once you join the Foundation- log in and you will have online access to high quality, vetted medical info on PBC.

Hope this helps.

[WillowW in reply to EileenUSA]

Hi...yes I know I'm not alone, and thank you for the great support , I have signed up via the link thanks ..hope you are ok

Thanks again

Jacklyn

[123PAT]

Hi i was diagnosed in June/July 2017 with PBC put on URSO straight away by specalist. Had appointment to go back for check up 6 months later but was cancelled by hospital and made for july 2018. But now have had to make new appointment with help of GP to go back April as i have been off work since early Feb with pains in right side some days worse than others. Not sure what stage my Pbc is at as specalist did not go into any real detail gave me a leaflet the prescription and said it was a slow progressing liver disease. Hopefully get answers soon.

[WillowW in reply to 123PAT]

Hi , thank you for getting in touch, I haven't seen anyone yet, which is adding to my anxiety levels.....do you live in the UK ? I take it you do by saying GP and specialist ...

I hope you get the info you need asap...not knowing makes things worse

Thanks

[123PAT in reply to WillowW]

Yes i live in the UK. I am going to write all my questions down ready for my visit to the specalist in April as i felt so overwellmed last visit and came away so confussed and frightened i know this is not how the last visit went but this is all i can remember of it. (You have PBC read the leaflet it explains everything (it does'nt) take the pills they help (don't know how) and see you in 6 months) (I did'nt they cancelled the appointment) I felt quite alone and lost as no one else i knew had even heard of PBC i thought it was a death sentence and some people thought that it was drink related once i mentioned liver even though i am only a social drinker or should i say WAS a social drinker as i now find alcohol tends to upset my tummy so i dont bother at all, mind you good job i dont give everything that upsets my tummy or i would starve i find one day i can eat something the next it upsets me then its fine again My family and friends have been very supportive however there are times i feel quite low as physically i look fine but feel like crap. No one has told me to watch my diet or change anything about my lifestyle, My GP told me to moisturise my skin due to the itching i do that anyway and they signed me off work for the last few months due to the pain in my right side but has said they do not know much about the condition. I say they as i never seem to talk to the same doctor every time i have phoned the surgury a different GP calls me back they normally send me for a blood test dont know why. I found that reading other people views on here has been helpful as now i know i,m not alone in this and as other people on here have said try not to troll the internet i did its the worse thing you could do You will proberly want to run for the hills after reading all my moans and groans but again dont. Last night was the first time i had gained enough courage to post anything thats why my post is so long but i have found it has helped the people on here are going through the same thing they will understand how you feel. So talk (rant) away like I have The scan though scary is needed to get you the appointment for the specalist when it arrieves try to take someone with you in case it all becomes a blur ask all the questions you want ask them to repeat the answers or explain if you dont understand, thats what i will be doing. Good luck

[234WARD03]

It's not a death sentence but GPs don't know much about it. They are general practicioners.

Your gasterentology depth should have a nurse dedicated to supplying you with help, it should be on your letter from gasterentology. If not phone gasterentology and ask if you can speak to nurse dealing with pbc. I've had this for about 20+++ years and late diagnosis but I'm fine. 73 and still standing. Nurse was so helpful on the phone. Very tired sometimes but watch low fat diet and vitamin D, little and often.

Would love a larger and they say occasional drink is OK if you feel OK after. Personally it washes me out, so it's orange juice for boring me. Lol. I decline dinner offers as I have job swallowing big meals and end up being sick. If I do go I pick a side or starter as main. Child's meal in some places.

Please ring the nurse. They are a mind of information and know more than the general practitioner about pbc and liase between specialist and you.

Don't worry stay strong and be kind to yourself. As for other people, yes they don't understand what it's like, especially those close. They think your an old whinger.

When others slowly understand that it's an autoimmune disease attacking your liver they kind of change their mind. It's just not well known disease like fatty liver disease or alcohol related chirosis.

Stay strong and ask questions to put your mind at ease.