Just beginning the confirmation and staging of my PBC diagnosis.

[FranSP]

Hi All, I see from this site that I stumbled upon that I am not alone. My Alk Phos was rising each time I visited my Endo ( IDDM), so he referred me to G.I. in Manhattan. I was told that the IDDM was probably an autoimmune response. This PBC most likely the same. Lucky me! Another challenge.

Tomorrow I go for an MRI and the Bx. is next week. I’m a 78 very active woman and I’m not ready to die yet.

[4pjx__]

If you are still quite active then chances are that there isn't too much damage to your liver. If that's the case I bet you'll be just fine. You will hear a lot of people say you will most like die with this disease and not from it. I think there are quite a few people that find this illness to be more of an inconvenience than anything. Good luck !

Pam

[FranSP in reply to 4pjx__]

Thank you for those encouraging words Pam.

I’m exploring the conference in Texas this month. Do you think it is worthwhile going? I’m in New York.

[4pjx__ in reply to FranSP]

I bet it would be worthwhile to go. I'm not going...I'm worried it would cause me more anxiety about my condition. I was diagnosed last year at stage 3 severe fibrosis. Although I feel pretty good lately, sometimes the idea of it really freaks me out.

I'm pleased to meet you! I live in Colorado

[FranSP in reply to 4pjx__]

I decided to make the trip. They told me that I got the last room.

Had the MRI today. Results soon.

Bx. next week. Is a fibroscan important?

Fo me, knowledge is power.

Glad you are feeling better these days. Each day is a gift.

FranSP

[4pjx__]

I think, if you are having a biopsy then no need for the fibroscan.

Let me know about the MRI results and the conference!

Pam

[FranSP in reply to 4pjx__]

I certainly will let you know.

Fran

[FranSP in reply to 4pjx__]

OK results are in: normal liver and bile ducts

So, Alk phos still way out of wack.

Bx should give more info.

Fran

[jplitt]

Hi Fran. I live on Long Island and have been recently diagnosed as well. I’m 50 and have no symptoms—found out through routine blood work. I’m struggling with diagnosis to say the least. I started taking urso, hoping that slows down progression. Would love to hear more about what you learn at conference. What dr are you seeing in Ny?? I went to my Sinai—dr. Kim.

[FranSP in reply to jplitt]

By the way, I haven't taken any liquor since the day I was told that I had PBC.

[jplitt in reply to FranSP]

So....this is where I get confused. Everything I’ve read says that alcohol does not cause the disease. Most ppl on this site say they do not drink or drinking makes them feel horrible. I am a social drinker and I love chocolate martinis. Yummy!! While being diagnosed, I stopped all alcohol—my alk phos went up! When I ask is it ok to drink some alcohol I get all different answers. “No more than one a day”, “no more than one a week”, “no alcohol at all”, “you can drink in moderation”. Super, super unsettling. There is no damage to my liver right now—my biopsy showed it’s inflamed. Now I’m panicked and have stayed away from alcohol completely. Although I am sure I will indulge in one or two in the future. So confusing!!

[FranSP]

I am seeing Dr. Ritu Aguarwal at Mt. Sinai. I am very pleased with the way she explains the situation with me. She is calm and approachable. She also communicates promptly on the portal. I wasn't rushed. I too have no symptoms, but lab work Alk Phos is very high. I had an MRI yesterday and last night she sent the results to me, "normal" . I'm scheduled for bx. this Monday. No meds yet. We shall see...

I am all set to go to the PBC conference.

Stay in touch.

Fran

[jplitt in reply to FranSP]

Good luck with the other tests! It’s so hard for me to comprehend that I have this with no symptoms. But, I’m so grateful to have caught it early. So far I’ve had zero side affects to to meds. Would love to hear what you learn at the conference. Stay well!

[My-life]

I was diagnosed 4 yrs ago. Very tired. I think it errects everyone differnt. My numbers are up. Dont be afrid to ask your doctor any questions. Take care your in a good place.

[JC1967]

HI

Just diagnosed this week. Fibrous can 10.4 so f2-f3. MRI tomorrow and biopsy end of month. I live in Canada and am 51. Symptoms are fatigue, bloating, aches. Also have fatty liver. Where to begin?

Julie

[Mellynelise17 in reply to JC1967]

Where in Canada are you Julie? I am in Hamilton, Ontario! I have not been 100% diagnosed but I have all the symptoms. Specialist says most likely so MRI next month. No mention of biopsy yet but on URSO and Cholestyrmine to help with the itching (no relief sadly). I also have fatty liver with enlarged liver, sever itching and insane fatigue. Was just in the ER for sever abdo pain but all my tests were good so everyone is stumped. Doctors think it’s most likely pressure on the liver capsule from it being enlarged. Praying a cure comes soon as these symptoms are very hard to live with😔

Best of luck to you Julie!

[EileenUSA]

Hi,

We've all been there with diagnosis shock and adjustments.

You will find your balance as you go. This site is fantastic source of peer support and info.

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

pbcfoundation.org.uk

Go to the PBC foundation- 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 the quality, vetted medical info on PBC. Under the existing members menu you will find a document called "compendium" Once you open this document scroll down to FAQ's and you'll find info about on AMA and other abbreviations from blood work results.

Hope this helps.

Also---

. Here's a video of January 2018 PBC conference. Helpful!

m.youtube.com/watch?v=m7Tyr...(Not working as expected?)