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Mystery Diagnosis. Please help!

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Posted 5/16/2011 10:32 PM (GMT 0)
Hi Dany and Connie,

How are you ladies doing? I went to see my Primary care and she wasn't alarmed but asked to repeat the AMA test in 3 months. I had the chance to talk to my mom's nurse this morning, and asked her to include AMA test for mom's next week blood work request, and she told me that mom's AMA was positive (which we didn't know).  So mom has a CT scan due this wednesday and we see her hepatologist next tuesday, I will be asking the question of PBC. Mom is diagnosed with drug induced auto-immune hepatitis, but how about PBC if her AMA is positive? Could it be that they misdiagnosed her? Her ANA's were always negative.

Do we have PBCers on this forum? It seems like, this disease runs in families, between mothers and daughters and my mom's mom and grandmother lived well in their early 90's and never had any major health problems (back in the old country).

I'm gonna wait to see a hepatologist until the next test results are out, but meanwhile, I'm concerned and somewhat worried and I know I shouldn't stress too much, but this was unexpected. Here I've been writing to you in regards to my mom, now, that has shifted and it's about me.

I truly appreciate your support and your prompt resposnses. So glad that there are forums, where we could vent and be understood. Thank you so much for listening to me.

Good Day...

Liverette

 

Posted 5/16/2011 10:41 PM (GMT 0)

Liverette, I think there is some genetic predisposal to autoimmune diseases.  We do have a few people here with PBC..Charley is one who posts about his wife with PBC.  You might want to read his posts (do a search for his name.)

Dany (who knows a lot more than I do about this topic) is out of town this week, but hopefully can pop in this evening and respond to you.

Hugs,

Connie

Posted 10/7/2011 10:52 PM (GMT 0)
Hi Danny and Connie,

How are you you all doing? Hope you are doing well. Mom is doing well, and the docs are slowly decreasing her predinsone, she's on 6mg and 100mg Imuran now and all her liver functions are normal, and she was tested negative on AMA and ANA, but still they think she has auto immune hepatitis.  And as far as me, I had the AMA redone at a different lab and the result was 1:640, definitely high enough for PBC diagnosis. I went to see a hepatologist at USC twice now, and he didn't know what to do with my case, since my liver ultra sound was normal and the liver functions are normal too, except this last visit the ALT was 45 avery lightly elevated, and he wasn't concerned for some reasons. He ordered 2 additionsl tests AMA M2 and Bile acids test for the coming visit. He didn't think it was necessary to have a liver biopsy now. As of now, he hasn't given me a diagnosis yet.

So this is my update since May, and I don't know if you ladies are encountering any other new members with PBC. I feel fine, no fatigue and the itching in my palms are minimul, but there is always that fear that something is cooking and will show up soon. As always, I find comfort and support in here and wanted to hear your sweet voices through writing.

Thank you for readiing my post and have a great weekend.

Much Love,
Liverette

Post Edited (Liverette) : 10/7/2011 4:55:44 PM (GMT-6)

Posted 10/7/2011 11:09 PM (GMT 0)
Dear Connie,

I didn't even know that you were on a transplant list, let alone waiting to get a transplant any moment now. I will be praying for you my dear and with the bottom of my heart, I wish you well and hope that you have so much strength during the whole surgery time. My thoughts and prayers are with and I'll be checking the forum everyday to see updates. Take care and much love to you.

Liverette
Posted 10/8/2011 1:06 AM (GMT 0)
Hi, Liverette!  I'm glad you are stable.

Yes, I was listed July 18th.  When this chest congestion clears up, I hope to get another chance at transplant very soon.  I was listed July 19th, due to liver cancer.

Hugs,

Connie

Posted 10/8/2011 1:37 AM (GMT 0)
Hi Liverette!

So happy to hear mom is well and they are tapering her pred...the last of the taper should start soon and will be the slowest as they need to make sure her adrenals kick back into action.

As per you, I understand why they haven't officially made a diagnosis or had any treatment started but I understand your frustration as well.  Perhaps with the next few tests they'll be able to come to 100% agreement on what's going on.  No one likes the limbo...unless they're at a party!  tongue   The treatment is Ursodiol.  I'm on it for a side effect but haven't had any issues with it.  Were your ANAs also high? 

Posted 10/8/2011 1:46 AM (GMT 0)
My ANA was negative. Had other many antibodies checked too, and they were also negative. Apparently, it's difficult to make a diagnosis of PBC only with AMA, and the fact that my liver functions are ok, and no symptoms yet, the liver biopsy won't show anything most likely he said, and it's not necessary to do it. I just have to wait and see...What is difficult for me is to wonder when it's gonna flare, that is if it's gonna flare. It was so accidental to discover my issue with AMA, since my mom tested negative on all of them.

Well, some people say, it's good to know ahead of time to be prepared to it, but I am the paranoid type and don't take it lightly.

How have you been? How are your LFTs? Hope you're stable and will be for the rest of your life. It's so nice to see you and Connie, helping so many people on this Forum Dany, and it's so comforting to know that you're always there whenever we need you.

Thanks again!
Liverette
Posted 10/8/2011 3:02 PM (GMT 0)
I will go for my regular bloods on Monday...I've been a slacker...was supposed to go in September but that month flew by!!  So hopefully they are fine.  A lot of people only find an AIH flare on their labs and don't necessarily feel it.  It's why we go for bloods every 3 months for the most part.

It's my pleasure to help others.  Once I finally break down and get a smart phone, I'll be able to pop on more frequently smilewinkgrin

I guess you'll have to try to be more comfortable with waiting but have they talked about regular blood work?

Posted 10/8/2011 3:37 PM (GMT 0)
He said, if the AMA M2 comes out positive, then we will see you once a year and have labs twice a year. He was going to get in touch with a professor at Harvard who knows more about PBC and he said hopefully he'll have more to tell me in the near future. He also said that PBC is a rare disease and there aren't many studies and research done to understand every aspect of it.

Well,as far as you Dany, please don't be a slacker! You tell us to follow up closely and be our own advocate, than you gotta go and have your labs done asap. lol...I know everything will be ok!

Liverette
Posted 10/9/2011 1:35 AM (GMT 0)
What's that saying?  "Do as I say, not as I do" cool

I'm usually clockwork so being a week'ish out of September isn't too bad!!

There is a PBC conference every year.  I think it was a few weeks ago in SF.  Might be something you want to look into...it was in San Antonio in 2010.  Also check with your local American Liver Foundation.  The one in SD has a Liver Wellness conference and they have guest speakers in on different liver diseases.

Posted 2/20/2014 3:24 PM (GMT 0)
Hi Dany and Connie,

Hope this post finds you both well. Haven't been in here for 3 years. How are you ladies? A little update on mom. She has been doing well with normal liver functions, off of prednisone and inly on 50mg of Imuran.

I still haven't been officially diagnosed with PBC but being monitored for any liver function changes. Once the AMA positive, you can't go back. My liver enzymes have been mostly in normal range, except sometimes ALT very slightly elevated. I would like to be on Ursodiol but don't want to have a liver biopsy done. I need to discuss this with my hepatologist.

I have been organizing the Southern CA PBCers luncheon for the 3rd consecutive years and have met wonderful people along the way. Some of them have overlapping AIH as well and on Imuran. One of the ladies live in San Diego with AIH.

I just wanted to touch basis with you and see how you are doing. Hope all is well with you and your loved ones.

Best regards,
Liverette
Posted 2/20/2014 5:32 PM (GMT 0)

Well that kind of answers my question on the other post :-)

I'm in San Diego too...let me know the next time you have a luncheon and I'll try to drive up!  My dad and his family live up in LA...so I can make a day of it :-)

It really is fantastic that you have organized that for the PBCers!!  Congrats to you!

Posted 2/20/2014 8:25 PM (GMT 0)
Dany,


I am so sorry to hear about Connie passing. She was one brave woman who despite all her health problems, tried to help the newbies and gave us hope. May she rest in peace.

We are a group of 20 PBC/AIHers, ranging from 21 yrs of age to 78. Wonderful ladies and 2 gentlemen. Most of us are going to attend to the PBCers conference in Las Vegas on July27-30.

I will definitely keep you informed if we have an upcoming luncheon. We just did, at Mimi's in the city of Anaheim and it was wonderful to meet new people who understand what we are going through. And noticed that the PBCers with AIH are doing somewhat better, and I think it is the Immunosupressant Imuran that is keeping the PBC out of the flare. I will bring this up at the conference to the research team from UC Davis.

You were an inspiration to me, when I needed support, information and hope back in 2010. That is why I am involved now, in order to bring hope and support to people like us who are facing liver disease.

You have my email address, in the case you encountered any PBCer here at the healingwell forum, that needs suppport system. There is also the PBCers Organization that we are all members of, receiving daily digests, having volunteers to chat with every evening. Some of the volunteers have AIH as well, so if anyone in here needs extra AIH support, could always benefit from the PBCers organization also.

I will email you the San Diego PBCer/AIH lady's email. You can always communicate with each other. She is around your age, active, and a positive woman, living in Pacific Beach.

Best regards,
Liverette
Posted 2/20/2014 9:41 PM (GMT 0)
Great to see you L!! Thanks for the update!! Sounds like you're maintaining and that is a good thing!!

Sandia
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