PBC Foundation

[Dwaffle16]

I recently joined the PBC foundation. I live in the US. I am unclear on the best way to contact them. I am afraid to call the number because of it charging a lot to my phone bill. I do not see a way to email a consultant about medical questions. Please advise. Is there a way to call them without a phone charge? Is there a way to email a consultant and ask medical questions?

[EileenUSA]

[e-mail]

Hi - that's the email address you can use. If you are in USA remember there's a time difference which effects timing of replies etc,

Also if you log in to the foundation you can find answers to questions on PBC in their on line resources. Particularly helpful to folks new to PBC is the Bear Facts newsletter from Summer 2017. It contains an 8 page insert that has great easy to understand info on treatment and questions to ask drs etc etc. if you log in you can download it ( free).

Hope this helps.

[teddybear7]

They will have given you a membership password for the web site. Look up the compendium it is a Bible of answers to questions. Also Robert often sees posts on here & sometimes gets in touch if you need help with it. Xx

[PBCRobert Partner]

Hi Dwaffle.

We don't do the "write to us and ask a consultant" service as such, for all we are armed with a huge amount of information.

We can currently offer the helpline service on Skype. Feel free to add me: PBCRobert.

As the others have siad, there is good information available in the section specifically for people who have signed up with us but we absolutely understand that, sometimes, that conversation and opportunity to have direct questions answered specifically in your own personal context can make a huge difference.

Feel free to PM me here, also, if you wish.

Yours, as ever,

Robert.

[Dwaffle16 in reply to PBCRobert]

I really wanted to just share what has happened recently and ask someone there opinion based on their knowledge of PBC. I recently had an aunt diagnosed with PBC. I am only 24 years old and for two years have had an elevated alkaline phosphatase level ranging between 150s and 160s with a normal range below 115. When my aunt was diagnosed I looked up PBC and was surprised to see the elevated alkaline phosphatase level being a number one indicator. My GP then did the AMA M2 test and it was 24.6 which fell into an equivocal range. I then went to a gastroenterologist that specializes in PBC. He repeated the test and it was 29.6. He is calling this a low positive and repeating the test in three months. Some of my symptoms are a few years ago I had a severe case of pyruitus that lasted for a few months. I also have severe nausea that makes it difficult for me to eat. I have also been diagnosed with small fiber neuropathy and had my gallbladder out at the age of 16. I had the IGM level test done and mine was actually in the low normal range not at all elevated. I read that with PBC people almost always have an elevated IgM level which I do not have. I wanted someone to listen to my history and just offer their opinion and or advice.

[DoreenD]

Hi, As you are in the US do you know about the pbcers.org .....they are a PBC Support group that have loads of information on their Website and have meetings and conferences in the USA. They have a email PBC support group and also a Facebook page. All the best from Doreen in Australia.

[Hidden]

Hi Dwaffle16 any updates on your case?